Member Organisations

Search the map below to see the current member organisations. Click the markers for further details or see the full listings at the bottom of the map.

Member Organisations by Country

Austria

FHchol Austria
Fürst Liechtensteinstr. 2/9
1230 Wien
Tel. +43 (0) 676 530 38 85
http://www.fhchol.at

ÜBER UNS

FHchol Austria ist eine gemeinnützige Patientenorganisation für Patienten mit Familiärer Hypercholesterinämie oder verwandten genetischen Stoffwechselstörungen. Es ist unser erklärtes Ziel und unsere Vision, Herzkreislauferkrankungen, die auf FH zurückzuführen sind, zu verhindern. Wir schärfen das Bewusstsein für FH und weisen darauf hin, dass FH schon in der Kindheit zu Atherosklerose führen kann.  Ebenso setzen wir uns für eine möglichst frühzeitige Diagnose und optimale Behandlung für FH-Betroffene ein – getreu unserem Motto: Über FH Bescheid zu wissen kann Leben retten!

AUFGABEN & ZIELE

  • Bewusstseinsschärfung für FH – eine unterdiagnostizierte, aber häufige Fettstoffwechselerkrankung
  • Förderung der frühzeitigen Diagnose/des rechtzeitigen Screenings auf FH und der optimalen Therapie für FH-Betroffene
  • Unterstützung des „Fass dir ein Herz“-FH Register & Screening-Projekts der Österreichischen Atherosklerosegesellschaft in Österreich
  • Forderung von Präventionsprogrammen an die Politik
  • Lobbying-Tätigkeit bei Stakeholdern zur Erstattung moderner Therapien
  • Zusammenarbeit mit Klinikern und dem Gesundheitssektor
  • Public Relations & Medienarbeit
  • Regelmäßige Patiententreffen & von Experten begleitete Symposien, Konferenzen, etc.
  • Produktion von Info-Materialien, Filmen, Newslettern; Website und Social-Media-Aktivitäten

Kontakt:

FHchol Austria
info@fhchol.at
www.fhchol.at
https://www.facebook.com/FHcholAustria

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ABOUT US

FHchol Austria is a non-profit patient organization for patients with familial hypercholesterolemia and related genetic lipid disorders. Our vision is to prevent premature cardiovascular disease due to FH. By raising awareness of FH, which may cause atherosclerosis as early as in childhood, we promote early diagnosis and optimal treatment of FH. Our motto is: Get wise to FH and save lives!

OBJECTIVES & AIMS

  • Raising awareness of FH: a poorly known but frequent lipid disorder
  • Promotion of early diagnosis/screening and optimal treatment for individuals affected by FH
  • Support of the FH Registry & Cascade Screening project of the Austrian Atherosclerosis Society in Austria
  • Urging politicians to finance prevention programs
  • Lobbying with stakeholders to promote reimbursement for novel therapies
  • Collaboration with clinicians & the health sector
  • Public relations & media work
  • Regular patient meetings & symposia hosted by experts
  • Production of information material including films on FH and regular newsletters, website and social media

Contact:

FHchol Austria
info@fhchol.at
www.fhchol.at
https://www.facebook.com/FHcholAustria

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Belgium

Belchol
Rue des Champs Elysées 63
1050 Bruxelles
http://www.belchol.be

VISION

L’association de patients belge BELCHOL s’est donné pour objectif une double mission : informer les personnes touchées directement ou indirectement par l’hypercholestérolémie familiale et défendre la qualité de vie de ses membres.

A terme, BELCHOL a pour ambition d’harmoniser le dépistage et le suivi des familles ainsi que de faciliter le remboursement des tests et des traitements médicamenteux.

CE QUE NOUS FAISONS

Conscientiser le public, les professionnels de la santé et les instances gouvernementales sur la maladie à savoir:

  • Conférence au Parlement belge en présence de plusieurs autorités compétentes sur la problématique de l’hypercholestérolémie familiale
  • Développement de stratégie et promotion du « cascade screening » (dépistage familial) avec l’aide des médecins généralistes et des patients eux-mêmes
  • Publications d’articles de presse dans différents journaux grand public et médicaux
  • Présence et interactions sur les réseaux sociaux (partages d’expériences de patients, conseils relatifs à une bonne hygiène de vie, …)

VISIE

BELCHOL, de Belgische patiëntenvereniging, heeft een dubbel doel voor ogen: de personen die direct of indirect in aanraking komen met familiale hypercholesterolemie informeren en de levenskwaliteit van haar leden verdedigen.

Op termijn heeft BELCHOL de ambitie om de screening en opvolging van families in overeenstemming te brengen en de terugbetaling van testen en behandelingen met geneesmiddelen te vergemakkelijken.

WAT WIJ DOEN

Het publiek, professionele zorgverleners en overheidsinstanties bewustmaken over de ziekte, dankzij:

  • Een conferentie in het Belgisch Parlement in het bijzijn van meerdere bekwame autoriteiten omtrent de problematiek van familiale hypercholesterolemie
  • De strategieontwikkeling en de promotie van “cascadescreening” (familiale screening) met de hulp van huisartsen en de patiënten zelf
  • Publicaties van persartikels in verschillende kranten, zowel voor het brede publiek als voor de medische wereld.
  • De aanwezigheid en interacties op sociale media (delen van ervaringen van patiënten, advies over een gezonde levensstijl,…)

VISION

The patients association BELCHOL has two core missions: inform those directly or indirectly affected by familial hypercholesterolemia (FH) and maintain the quality of life of its members.

Over the longer term, BELCHOL aims to harmonise the screening and the follow-up of families as well as to facilitate the reimbursement of tests and drug treatments.

OUR ACTIONS

We increase the awareness of the general public, health care professionals and government bodies about the disease by:

  • Holding a conference on Familial Hypercholesterolemia and related issues at the Belgian Parliament in presence of key decision makers
  • Developing a strategy that promotes (family) screenings thanks to general practitioners and patients themselves
  • Featuring articles in various medical journals as well as in the general press
  • Being proactive on social networks (share patients experiences and tips, advice on a healthy lifestyle, etc.)
Czech

Diagnóza FH
Jiráskova 242
507 23 Libáň
Tel. +420 608 234 466
www.diagnozafh.cz

NAŠE VIZE

Chceme podat pomocnou ruku všem, kteří to potřebují – pacientům s FH, jejich rodinám a jejich lékařům. Jsme připraveni pomáhat při nedostatku informací o současné medikamentózní léčbě, životním stylu a výživě.

CO DĚLÁME

Podporujeme vznik malých regionálních skupin pacientů, v nichž je možné sdílet zkušenosti a vědomosti související s onemocněním. V neposlední řadě je naším cílem pravidelně informovat širokou veřejnost o existenci FH, dalších hereditárně podmíněných dyslipidémiích a o zdravém životním stylu v prevenci kardiovaskulárních onemocnění (tiskové konference, přednášky, letáky a brožury v lékařských ambulancích atd.)

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VISION

We want to be of help to all who need it – to patients with FH, to their families and their physicians. We are ready to help with regard to the lack of information about current medical therapy, life-style changes and diet.

WHAT WE DO

We support the creation of small regional groups of patients where they can share experience and knowledge. Last but not least, our aim is to inform the public continuously of the existence of FH, other hereditary dyslipidaemias and about healthy life-style for prevention of cardiovascular disease (by means of press conferences, lectures, handouts in outpatient departments etc.).

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Finland

Suomen Sydänliitto
Oltermannintie 8
PL 50
00621 Helsinki
Tel. (09) 752 7521
https://sydanliitto.fi/

NYKYTILA

Suomessa on 11 000 familiaalista hyperkolesterolemiaa (FH) sairastavaa. Tämä perustuu oletukseen taudin yleisyydestä 1:500. Esiintyvyys saattaa olla suurempikin, jolloin potilaita on vastaavasti enemmän.

Kelan erityiskorvattavuus perinnöllisen rasva-aineenvaihdunnan häiriön (pääasiassa FH) lääkeisiin on 5 000 henkilöllä. Ei tiedetä, kuinka moni näiden lisäksi saa lääkitystä sepelvaltimotaudin perusteella tai muuten.

Suomessa ei toistaiseksi ole FH-potilaiden yhdistystä. Vuonna 2015 perustettiin Facebook-ryhmä ”FH-tauti”, joka kasvaa hitaasti. Toukokuussa 2016 siinä on 11 potilasta ja 7 ammattilaista.

MITÄ TEEMME

Suomen Sydänliitto on 60-vuotias, Euroopan vanhin sydänjärjestö. Tehtävämme on tukea sydänpotilaita ja edistää sydänterveyttä ja sydänsairauksien ehkäisyä.

Sydänliiton tärkeisiin tehtäviin kuuluu tietoisuuden levittäminen kolesterolista sepelvaltimotaudin riskitekijänä.
Sydänpiirit ja -yhdistykset suorittavat kolesterolimittauksia ja ohjaavat tarvittaessa jatkotutkimuksiin.

Verkkosivuillamme (www.sydan.fi) on runsaasti tietoa FH-taudista (www.sydan.fi/terveys-ja-hyvinvointi/familiaalinen-hyperkolesterolemia-fh) ja yleisemmin kolesteroliasioista (www.sydan.fi/kolesteroli-kohdalleen). Sivuillemme on tulossa sovellus Ruotsissa kehitetystä FH-testistä. Verkkosivuillamme, Sydän-lehdessä ja muissa painotuotteissamme on säännöllisesti FH-aineistoa.

Verkkosivujen Asiantuntia vastaa -palstalla voi esittää kolesteroliin ja FH:aan liittyviä kysymyksiä. Jaamme tietoa myös Facebook-ryhmän kautta.

Sydänliitto tekee yhteistyötä ammatillisten järjestöjen kanssa FH-tietoisuuden lisäämiseksi terveydenhuollon ammattilaisten keskuudessa.

Ajankohtaisena tehtävänä on FH-potilaiden verkoston kasvattaminen Facebookissa, mikä saattaa tulevaisuudessa johtaa yhdistyksen perustamiseen,

CURRENT SITUATION

There are 11,000 FH patients in Finland assuming 1:500 prevalence, more if higher estimates apply.

5,000 receive Special Medication Reimbursement due to hereditary dyslipidaemias, mainly FH. An unknown number may receive statins based on diagnosed coronary heart disease or otherwise.

No FH patient organisation exists as yet. A Facebook group “FH-tauti” was founded in 2015 and is slowly expanding, comprising 11 patients and 7 interested professionals (May 2016).

WHAT WE DO

The Finnish Heart Association is a 60-year old organisation, the oldest of its kind in Europe. Our mission is to support heart disease patients and to promote heart health and prevention of heart disease in society.

Advocating awareness of high plasma cholesterol as a risk factor for coronary heart disease is a high priority for the Association.

Regional and local heart associations measure blood cholesterol concentrations and refer for further work-up and treatment as indicated.

Our web pages (www.sydan.fi) contain extensive information on FH (www.sydan.fi/terveys-ja-hyvinvointi/familiaalinen-hyperkolesterolemia-fh) and other cholesterol-related issues (www.sydan.fi/kolesteroli-kohdalleen). An adaptation of the Swedish FH test is being published on our pages. FH related materials are regularly published in our web and print media.

Our Ask the Expert section is open to questions related to cholesterol and FH. We provide information within the Facebook group.

The Heart Association collaborates with professional organisations to promote FH awareness among medical professionals.

At present, we promote the development of FH patient networking within the Facebook group, in view of a formal organisation in the future, if desired.

France

Association Anhet.f
16, rue Brûlée
51100 REIMS
http://www.anhet.fr

VISION

L ‘hyper cholestérolémie familiale est une maladie trop peu connue en France. Aidez-nous à lui faire sa juste place pour mieux la combattre.

L’hypercholestérolémie familiale ou HF est une maladie caractérisée par une élévation du « mauvais cholestérol » dès la naissance.

Dans ce cas, l’hypercholestérolémie n’est pas le résultat d’une mauvaise hygiène de vie et d’une mauvaise alimentation, c’est une maladie familiale, la maladie génétique la plus répandue.

L’HF est une maladie invisible, plus de 90% des personnes atteintes en France ne sont actuellement pas diagnostiquées.

En l’absence de dépistage et de prise en charge précoce, le risque d’accident cardiovasculaire est augmenté dès le plus jeune âge.

ANHET est l’unique association de patients en France : rejoignez nous!

CE QUE NOUS FAISONS

Pour prendre notre avenir en main, ANHET s’engage à:

  • Informer le public, le corps médical et les autorités sanitaires et médicales, à faciliter et améliorer le diagnostic et à faire connaître et reconnaître cette maladie génétique.
  • Favoriser l’échange entre patients et apporter une aide technique et morale aux familles confrontées à une hypercholestérolémie familiale.
  • Transmettre l’information sur l’évolution de la recherche médicale.

Nous sommes déterminés à créer un groupe important, capable de peser sur les orientations politiques en France, avec l’Europe. Nous pourrons ainsi agir efficacement et en toute indépendance pour répondre aux attentes des patients et des familles concernés par cette.

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VISION

Familial Hypercholesterolemia (FH) is not a well-known disease in France, help us to give it its rightful place and to fight it more effectively.

FH is a disease characterised by its high level of “bad cholesterol” from birth. In such cases, the hypercholesterolemia is not the result of a bad lifestyle and a poorly balanced diet but a familial matter and it is the most widely spread genetic disease.

FH is insidious and more than 90% of the people affected in France are not diagnosed yet. Without early screening and care, the risk of cardiovascular accident increases from an early age.

Anhet is the only patient’s association in France, JOIN US!

WHAT WE DO

To take care of our future, Anhet is committed to:

  • informing the public, the medical, health and social authorities in order to disseminate the current state of scientific and medical knowledge,
  • improving the diagnosis and making it more accessible, raising the awareness about this illness
  • facilitating exchanges between patients and bringing technical and moral support to their families
  • delivering information about the evolution of medical research.

We want to create an important group, capable of influencing policy directions in France with the support of Europe. Thus we would be able to act freely and efficiently in order to answer to the questions and expectations of the concerned families.

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Germany

Cholesterin und Co e.V.
Hoherodskopfstraße 30
60435 Frankfurt am Main
Tel. +49 69 95425945
http://www.cholco.org

VISION

Aufmerksamkeit für Familiäre Hypercholesterinämie erwecken – Wissen kann Leben retten!

Die Patientenorganisation CholCo hat es sich zum Ziel gesetzt, Familiäre Hypercholesterinämie in Deutschland bekannt zu machen. Mit einem zukünftigen Cholesterin Screening bei Kindern wäre eine frühe Diagnosestellung und Therapie gesichert, um lebensbedrohende Ereignisse wie Herzinfarkt oder Schlaganfall zu verhindern.

WAS WIR TUN

CholCo setzt auf den persönlichen Kontakt und Erfahrungsaustausch unter Betroffenen. Die Sicherstellung der frühzeitigen und optimalen medizinischen Versorgung soll gefördert werden, ebenso wie die optimale Prävention von Herzkreislauferkrankungen. CholCo tritt als Interessensvertretung gegenüber Kostenträgern und medizinischen Leistungserbringern auf. Wir engagieren uns in der internationalen Zusammenarbeit und Vernetzung, vor allem aber in der Bekanntmachung des Krankheitsbildes.

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VISION

Raising awareness for Familial Hypercholesterolemia – knowledge can save lives!

The patient organisation’s goal is to raise awareness for Familial Hypercholesterolaemia across Germany. Future cholesterol screening in children would ensure early diagnosis and therapy that could help prevent life-threatening events such as heart attack or stroke.

WHAT WE DO

CholCo fosters personal contact and exchange of experience between individuals affected by FH.

CholCo promotes the early diagnosis and optimal medical treatment of FH with the help of state funding to guarantee prevention of early heart disease. CholCo serves as an advocacy group vis-à-vis duty bearers and health insurance companies. We are co-operating and networking internationally, but above all we promote awareness of FH.

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Greece

LDL Greece
Lykourgou 9 (4th floor),
Omonoia,
Athens
Tel. 6996906881
https://www.ldlgreece.gr

Ο ΣΥΛΛΟΓΟΣ μας έχει χαρακτήρα μη κερδοσκοπικό, με πρωταρχικό σκοπό τη διεκδίκηση και παροχή κάθε δυνατής επιστημονικής, κοινωνικής, οικονομικής και ηθικής συμπαράστασης προς τους ασθενείς που πάσχουν από οικογενή υπερχοληστερολαιμία και τις οικογένειές τους.

  • ΑΠΟΣΤΟΛΗ ΤΟΥ ΣΥΛΛΟΓΟΥ Η συμμετοχή και συνεργασία του ΣΥΛΛΟΓΟΥ με επιστημονικούς οργανισμούς ή οργανώσεις, καθώς και με άλλους συλλόγους και με κάθε συναφή φορέα, οι οποίοι ασχολούνται με κάθε τρόπο με το ζήτημα της οικογενούς υπερχοληστερολαιμίας και την αποτελεσματική αντιμετώπιση της πάθησης με νέες βελτιωμένες μεθόδους θεραπείας, διάγνωσης και ανίχνευσης φορέων.
    Η ενημέρωση και κάθε μορφής πληροφόρηση του γενικού πληθυσμού, αλλά και ειδικότερα όσων έχουν σχέση με τη νόσο, προκειμένου να ευαισθητοποιηθούν για αυτή την «κρυφή», αλλά τόσο απειλητική για τη ζωή ασθένεια.
  • Η προστασία των δικαιωμάτων των ασθενών και η διεκδίκηση από το κράτος της έμπρακτης ενεργούς συμπαράστασης προς τους πάσχοντες και τις οικογένειές τους.

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Our association is non-profit. Our first priority is providing and claiming any possible scientific,financial,social, and ethical assistance to the patients suffering from FH , and to their families.

  • Our association’s mission is to participate and collaborate with scientific societies or associations, other patient groups, and any other FH related initiative that focuses on FH in any possible way. From treating FH with improved new treatments, to diagnosing new patients. Finally, access to information and informing the general public, but also people related to FH, is one of our top priorities in order to raise awareness for this silent-yet-deadly condition.
  • Ensuring that patient rights are maintained, and claiming assistance from the government for FH patients and their families.

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Hungary

SZÍVSN Országos Betegegyesület
1134 Budapest,
Angyalföldi út 36 III/122.
Tel. +36/20-825-8076
http://www.szivsn.hu

Rólunk

FH Magyarországi betegszervezete 2016 januárjában alakult meg a SZÍVSN betegszervezet irányítása alatt. SZÍVSN betegszervezet már több éve foglalkozik FH-s betegek szűrésével a Mona Lisa kampány keretében. Havonta 1-szer szervezünk méréseket illetve előadásokat ahol a magas koleszterin veszélyeiről tájékoztatjuk az érdeklődőket. A kampány célja a hazai FH páciensek megtalálása, részükre edukáció és vizsgálatok indítása.

Jövőkép

A familiáris hyperkoleszterinemia Magyarországon minden 500. felnőtt lakosból kimutatható egynél, és minden 20 magas koleszterinszintű egyén közül egyben fordul elő. Öröklődéssel a koleszterin értéke jelentősen meghaladhatja a 8 mmol/l-t is, miközben a védőfaktor HDL-koleszterin és a triglyceridszint is normális.

A kialakított FH csoport összefogásával felszínre hozhatók az egészségügyi ellátórendszer hiányosságaiból adódó problémák. Hazánkban 60 000 fő/év a kardiovaszkuláris betegségekből adódó mortalitás ezért a szervezet fontosnak tarja a betegség korai felfedezését és kezelését.

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About Us

FH Hungary Patient Organisation was established at the beginning of 2016 under the leadership of the SZÍVSN organization. The organisation deals with screening of FH patients within the framework of the Mona Lisa campaign. We organise measurements and events on a monthly basis where we provide information about the danger of high cholesterol. The aim of this campaign is identification of FH patients by providing them with education and conducting thorough examinations.

Vision

Familial hypercholesterolaemia can be found in one in every 500 adult inhabitants in Hungary and by 1 in every 20 individuals with high cholesterol levels.  Where levels of cholesterol are inherited, they can exceed 8 mmol/l while HDL cholesterol and triglycerid levels are normal.

With the creation of an FH group, we can identify the challenges of the gaps which exist in the Hungarian healthcare system. Mortality due to cardiovascular diseases can be found in 60,000 people each year and therefore the FH organisation considers early detection and early treatment to be important.

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Ireland

Croí Heart & Stroke Centre
Croí House
Moyola Lane
Newcastle
Galway
H91 FF68
Tel: 091–544310
https://www.croi.ie

About us

Croí is a not-for-profit foundation established in 1985 dedicated to fighting heart disease and stroke in the West of Ireland. We are an independent organisation, totally funded through our own fundraising activities, voluntary contributions and philanthropic support.

Vision

Our vision is to provide leadership in the prevention, control and recovery from cardiovascular disease.
We aim to increase awareness of cardiovascular risk factors such as cholesterol through our expert support, guidance and educational services.

What we do

In order to increase awareness of cardiovascular risk factors such as cholesterol (including FH), we aim to:

  1. Build healthier communities through education, advocacy and empowerment.
  2. Promote early diagnosis and access to treatment for those at risk of CVD.
  3. Pursue the highest level of cardiovascular health care services through engagement with policy makers and health practitioners.
  4. To establish partnership and cross sectional work
  5. Facilitate, participate and collaborate in vital research.

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Italy

A.N.I.F. – Associazione Nazionale Ipercolesterolemia Familiare (ONLUS)
Via dei Savorelli,
120 – 00165 Roma
http://www.associazioneanif.it

CHI SIAMO

L’A.N.I.F., Associazione Nazionale Ipercolesterolemia Familiare, ONLUS, è costituita da un gruppo di genitori i cui figli sono affetti da ipercolesterolemia familiare omozigote, eterozigote, o altre iperlipidemie geneticamente determinate.

LA NOSTRA VISIONE

In Italia sono stimati cinquanta casi di omozigoti, di cui solo una trentina sono diagnosticati e curati, e 120.000 eterozigoti, dei quali, come appare nei documenti dell’Organizzazione Mondiale della Sanità, solo l’1,9% è diagnosticato con certezza. Vogliamo che questi pazienti ricevano cure adeguate.

I NOSTRI OBIETTIVI

L’Associazione ha come finalità primaria la difesa degli interessi dei pazienti affetti da ipercolesterolemia familiare, e fornisce un sostegno a tutte le famiglie attraverso un’attività di informazione diffusa. Promuoviamo iniziative per favorire lo sviluppo e il consolidamento delle attività cliniche inerenti l’assistenza diagnostica e terapeutica ai pazienti, la ricerca sulla malattia e lo sviluppo delle terapie.

CONTATTI

Francesco Fuggetta – Press Officer
Via dei Savorelli, 120 – 00165 Roma
Telephone: +39 06 39378144
Email: francescofuggetta@hotmail.com
Website: www.associazioneanif.it
Facebook: www.goo.gl/w1Xwq7

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ABOUT US

A.N.I.F., Italian National Association of Familial Hypercholesterolaemia, NPO, consists of a group of parents whose children suffer from homozygous or heterozygous familial hypercholesterolaemia, or other genetically determined hyperlipidaemia.

OUR VISION

Fifty cases of homozygous FH are estimated in Italy, of which only thirty are diagnosed and treated, and one hundred and twenty thousand heterozygous, of which, as it appears in the documents of the World Health Organization, only 1.9% is diagnosed with certainty. We want these patients to receive adequate care.

OUR OBJECTIVES

The association has as its primary goal the defence of the interests of patients with familial hypercholesterolaemia, giving support to all families by providing widespread information. We promote initiatives to foster the development and consolidation of clinical activities related to diagnostic and therapeutic care to patients, disease research and therapy development.

CONTACT

Francesco Fuggetta – Press Officer
Via dei Savorelli, 120 – 00165 Roma
Telephone: +39 06 39378144
Email: francescofuggetta@hotmail.com
Website: www.associazioneanif.it
Facebook: www.goo.gl/w1Xwq7

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SISA
Via Lima,
31 00198
Roma
Tel. 06 845431
http://www.sisa.it

CHI SIAMO

GIP-FH è un’associazione di pazienti non a scopo di lucro che si propone di fare rete tra tutti i pazienti con ipercolesterolemia familiare presenti sul territorio nazionale.

OBIETTIVI E VISIONE

Promuovere l’informazione clinico scientifica rivolta alla diagnosi precoce, alla terapia dell’ipercolesterolemia familiare e delle complicanze exravascolari ad essa associate. Aumentare la conoscenza e la consapevolezza delle problematiche sanitarie e sociali collegate a questa patologia garantendo un adeguato supporto ai pazienti affeti da FH per fornire le terapie più adeguate.

L’associazione collabora con la società italiana per lo Studio dell’Arteriosclerosi (SISA) per l’organizzazione di eventi e la diffusione di materiale divulgativo attraverso la newsletter pubblicata sul sito www.sisa.it. Inoltre fornisce materiale informativo per i pazienti e i medici sul sito www.gip-fh.it e sulla pagina facebook https://www.facebook.com/GIPFH/.

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ALL ABOUT US

G.I.P. FH (Italy) is a non-profit group of patients that proposes to make a network to unit FH patients all over Italy .

OBJECTIVES & AIMS

We intend to promote scientific, clinical information in order to promote early screenings ,FH therapy, and to relate the cardiovascular consequences that FH can produce. We also aim to increase the awareness & knowledge of Health Service problems regarding this pathology , thus guaranteeing FH patients support and the correct therapy.

Our Group collaborates for the organisation of events & promotions in the newsletter published by the Italian ‘Sisa’ Foundation (for the study of Arteriosclerosis) on their website www.sisa.it. It also supplies information for patient and medical profession on the web site www.gip-fh.it and on the facebook page https://www.facebook.com/GIPFH/ .

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Latvia

Pacientu biedrība „ParSirdi.lv”
Olgas iela 3-7
LV 1048
Rīga
http://www.parsirdi.lv

PACIENTU BIEDRĪBA PARSIRDI.LV, LATVIJA

Vīzija/Misija: Samazināt saslimšanu un mirstību no sirds un asinsvadu slimībām, tai skaitā, ģimenes hiperholesterinēmijas, popularizējot veselīgu dzīvesveidu, izglītojot iedzīvotājus par slimību riskiem un simptomiem, kā arī aizstāvot pacientu tiesības uz kvalitatīvu veselības aprūpi un medikamentu pieejamību.

KO MĒS DARĀM

  • Organizējam izglītojošas un informatīvas kampaņas par sirds veselības profilaksi un slimību simptomiem, organizējam tikšanās un izglītojošus pasākumu ģimenes hiperholesterinēmijas un citu slimību pacientu grupām
  • Sadarbībā ar kardiologiem un citiem speciālistiem izstrādājam informatīvus un izglītojošus materiālus par ģimenes hiperholesterinēmijas un citu sirds un asinsvadu slimību profilaksi un ārstēšanu, kā arī veselīgu dzīvesveidu.
  • Mēs pārstāvam pacientu intereses komunikācijā ar lēmumu pieņēmējiem, lai veicinātu atbilstošāko ārstēšanas, medikamentu, kā arī pakalpojumu pieejamību.
  • Mēs sadarbojamies ar ekspertiem un lēmumupieņēmējiem, lai kopīgi rastu labākos risinājumus veselības aprūpes uzlabošanai.

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VISION/MISSION

To reduce the impact of heart and cardiovascular diseases, including FH, by promotion of healthy living, education of society regarding the risks and symptoms of diseases, ensuring the access to health care information. Advocacy of FH patients regarding the availability of appropriate healthcare and medicines.

WHAT WE DO

  • Organising heart health prevention and awareness campaigns, specific meetings and events for FH and other patient groups
  • In collaboration with cardiologists and other experts we create and produce educational materials for patients related to healthy lifestyle, FH and other cardiovascular diseases and risks.
  • We represent the patient interests in order to ensure that they receive the appropriate therapy and medicines, as well as services and caring.
  • We collaborate with experts and policymakers in order to improve the healthcare system

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Netherlands

Harteraad
Postbus 300
2501 CH DEN HAAG
The Netherlands
Tel. +31 088 – 1111 600
http://www.harteraad.nl/

Over ons

De Hart&Vaatgroep is de patiëntenvereniging voor hart- of vaatpatiënten en hun naasten. We werken nauw samen met de Hartstichting.

Missie en Visie

In het kort is de missie van De Hart&Vaatgroep: ‘Leef je leven met een hart- of vaatziekte’. Wij willen het mensen mogelijk maken om zelf regie te voeren over hun ziekte en leven daarmee, met de blik op de toekomst, persoonlijk en op maat.

Wat we doen

De Hart&Vaatgroep komt op voor de belangen van mensen die te maken hebben met een hart- of vaataandoening in Nederland en werkt voortdurend aan het verbeteren van de kwaliteit van de behandeling en de zorg. Dit realiseren we onder andere voor en met mensen met FH. Mensen met de diagnose FH zijn vertegenwoordigd in een werkgroep: ‘Diagnosegroep erfelijk hoog cholesterol (FH)’.

We bieden informatie (brochure, informatiesheets over FH, het kinderboek www.hartenvaatgroep.nl/fhwatisdat, magazine Vida), faciliteren het uitwisselen van ervaringen, schrijven artikelen over ontwikkelingen op het gebied van FH, organiseren bijeenkomsten, onderhouden contact met FH experts, signaleren mogelijkheden voor zorgverbetering en werken samen aan de lobby voor systematische opsporing van families met FH.

Huidige situatie

FH is een van de meest voorkomende erfelijke stofwisselingziekten in Nederland. Er zijn 70.000 mensen met FH (bij een prevalentie van 1:240), in 2015 was 42% opgespoord, voornamelijk door middel van het toenmalige bevolkingsonderzoek, dat in 2014 is beëindigd.

About us

De Hart&Vaatgroep is the patient organisation for people with cardiac, arterial en and venous diseases and their relatives. De Hart&Vaatgroep cooperates with the Dutch Heart Foundation.

Mission and Vision

In short the mission of De Hart&Vaatgroep is “to live your life with your disease”. We want to enable people to take the management of their life, with their disease being part of it, in their own hands, with a focus on the future, personally and tailored to their needs.

What we do

De Hart&Vaatgroep advocates for persons dealing with cardiovascular and venous diseases in the Netherlands and constantly works to improve the quality of treatment and care.

We realize this for and with people with FH as well. People who have diagnosed FH are represented in a working group: Diagnosis group familiar high cholesterol (FH).

We provide information (brochure, information sheets about FH, the childrens book www.hartenvaatgroep.nl/fhwatisdat, magazine Vida), facilitate the exchange of experiences, write articles about new developments on FH, organize gatherings, keep contact with FH experts, signal opportunities for care improvement and collaborate in political lobby to improve family screening programs for FH.

Current situation

FH is one of the most common familial metabolic diseases in the Netherlands. There are 70.000 FH people (at 1:240 prevalence), in 2015 42% had been screened, mainly because of the op to then existing national program for FH-screening

Norway

FH Norge,
PB 8965, Youngstorget
0028 OSLO
Tel. (+47) 95 23 21 31
http://www.f-h.no

VISJON

FH Norge skal ivareta FH (Familiær Hyperkolesterolemi) pasienters interesser ved å informere om FH og om behandling av FH. Videre skal foreningen virke som kontaktorgan overfor myndigheter og helsepersonell, fremme interessen for forskning og virke som kontaktledd i internasjonalt samarbeid.

HVA VI GJØR

Foreningen skal gjennom sitt arbeid bidra til økende grad av diagnostisering av FH pasienter og derigjennom forhindre alt for tidlig død, hjerteoperasjoner og uførhet blant personer med FH. FH Norge skal sette hyperkolesterolemi problematikken på dagsorden i den offentlige debatt.

FN Norge driver omfattende informasjonsarbeid mot våre medlemmer og helsepersonell, blant annet gjennom vårt FH-magasin, våre FH-dager og annen virksomhet.

VISION

FH Norway’s aim is to inform about FH and about treatment for FH. We are working as a contact point towards health authorities and healthcare personnel, raising awareness about FH and participating in international cooperation.

WHAT WE DO

Our work aims to find more FH patients and through that prevent early deaths, heart operations and disability due to heart disease.

FH Norway publishes the FH-magazine: this magazine is disseminated to patients and healthcare personnel in Norway. We also arrange FH-days and participate in other information and lobbying activities.

Poland

Stowarzyszenie Pacjentów
z Hiperlipidemią Rodzinną w Gdańsku
Dębinki 7
80-211 Gdańsk
http://hipercholesterolemia.pl

WIZJA

Misją naszej fundacji jest zwiększenie świadomości oraz zwalczenie stereotypów dotyczących Hipercholesterolemii Rodzinnej.

Stowarzyszenie pacjentów pomaga zrozumieć chorobę i pokazuje, jak z nią walczyć. Informując społeczeństwo mamy nadzieję na dotarcie do ludzi chorujących na hipercholesterolemię rodzinną by poprawić ich rokowanie i stworzyć poczucie wspólnoty wśród pacjentów.

CO ROBIMY?

Przygotowujemy akcje informacyjne w mediach pokazując społeczeństwu jak częstym problemem jest Hipercholesterolemia Rodzinna. Organizujemy spotkania, na których pacjenci mogą dzielić się swoimi problemami i doświadczeniami oraz porozmawiać z kardiologiem lub pediatrą by wiedzieć jak leczyć siebie, a przede wszystkim swoje dzieci. Promujemy zdrowy styl życia i właściwy sposób odżywiania. Bierzemy udział w konferencjach medycznych, by być na bieżąco z najnowszymi doniesieniami dotyczącymi zaburzeń lipidowych oraz nawiązujemy współpracę z organizacjami pacjenckimi z innych krajów.

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VISION

The mission of our foundation is to raise the public awareness and fight stereotypes about Familial Hypercholesterolaemia.

The patients association helps understand the disease and shows how to fight it. By educating society, we hope to reach people suffering from FH to improve their outcome and create a sense of community among the patients.

WHAT WE DO

We prepare information campaigns in the media showing the public how common a problem familial hypercholesterolaemia is. We organise meetings where patients can share their problems and experiences, and talk to the cardiologist or paediatrician to learn how to treat themselves and, above all, their children. We promote a healthy lifestyle and proper nutrition. We participate in medical conferences to keep up-to-date with the latest reports on lipid disorders, and we cooperate with patient organisations from other countries.

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Portugal

Associação Portuguesa de Hipercolesterolemia Familiar
NIPC: 5100334776
Rua Garrett, n. 19, 2ºA,
200-203 Lisboa
Tel: (351) 213 583 120
http://www.fhportugal.pt

OBJECTIVOS

  • Divulgar, junto da população em geral, a existência de FH e de outras dislipidémias hereditárias;
  • Esclarecer sobre os aspectos relativos a estas doenças e sensibilizar os médicos e os profissionais de saúde para a necessidade do diagnóstico e tratamento precoces e, assim, evitar a doença cardiovascular prematura.
  • Representar os interesses dos doentes na definição das políticas de saúde e estabelecer uma ligação efectiva com as organizações parceiras de todo o mundo.

O QUE FAZEMOS

Ações de divulgação junto dos media, participação em congressos médicos, colaboração com os profissionais do sector da saúde, instituições governamentais e indústria farmacêutica; organização de rastreios e iniciativas similares; cooperação internacional entre outras actividades.

 

 

OBJECTIVES

  • Inform the public in general of the existence of FH and other hereditary dyslipidaemias.
  • To make clear all the aspects related to these diseases and to make clinicians and healthcare professionals aware of the need for early diagnosis and treatment, thus preventing premature cardiovascular disease.
  • To represent the interests of the patients in the definition of health policies and to establish effective connections with partner organisations around the world.

WHAT WE DO

Activities to raise awareness in the media, attendance in clinical conferences and cooperation with the healthcare sector, government institutions and pharmaceutical industry; participation in medical conferences; organisation of screenings and related activities; international cooperation and much more.

 

Romania

FOBAC
Sos. Colentina, Nr.1, Bl. 34, Sector 2
Bucharest, Romania
Tel. 021 311 00 02
http://www.fobac.ro

To Follow

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To Follow

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Russia

HLP PO Russia
22-8-16, Festivalnaya str. 125581
Moscow
Russian Federation
Tel. +7 9161359617

VISION

Основной целью нашей пациентской организации является информирование широкой общественности о рисках гиперхолестеринемии, особенно семейной, тем самым содействуя предотвращению ранних сердечно-сосудистых заболеваних, информирование самих пациентов о современных методах лечения, делая его более доступным.

WHAT WE DO

Среди наших задач мы выделяем:

Организацию соответствующих информационных компаний/Лекции/Школы пациентов,
Сотрудничество с экспертами и госчиновниками с целью дальнейшего улучшения, действующей системы здравоохранения для увеличения степени доступности современных методов лечения/ препаратов для широкого круга пациентов,
Защита прав пациентов в получении качественного лечения,
Обеспечение возможности обмена опытом для пациентов,
Организацию/участие в конференциях и мероприятиях соответствующей тематики,
Широкое сотрудничество с пациентскими организациями из других стран.

VISION

The mission of our patient organization is to raise the public awareness about the risks of FH, preventing premature cardiovascular diseases, and to inform the patients about modern treatment for FH, making it available for them.

WHAT WE DO

In our activities we aim to:

Organize the awareness campaigns/lectures/Patient Schools,
Collaborate with experts and policymakers to improve the current healthcare system, making modern medications available for patients,
Represent the patient interests to ensure that they receive the correct modern treatment,
Provide the possibility to exchange experience among patients,
Organize/participate in the appropriate conferences and events on FH/HLP ,
Cooperate with PO from other countries.

Slovakia

Rodiny S FH
Borský Svätý Jur 697
90879
Slovak republic
Tel. +421 907 743 319
http://www.rodinysfh.sk

CIEĽ

Rodiny s FH je občianske združenie, ktoré je prioritne zamerané na pomoc pacientom s familiárnou hypercholesterolémiou (FH) a ich rodinným príslušníkom. Hlavnou náplňou združenia je podporovať kontakty medzi pacientmi s FH, ich rodinných príslušníkov a ošetrujúcimi lekármi a pomáhať im tak lepšie porozumieť tejto diagnóze ako aj zvyšovať povedomie o nej medzi slovenskou odbornou aj všeobecnou verejnosťou.

ČO ROBÍME

Našim cieľom je

  • vytvárať priestor pre vzájomné stretávanie pacientov s FH spolu s ich rodinnými príslušníkmi, lekármi, priaznivcami
  • organizovať odborné semináre, kurzy a tlačové konferencie o problematike familiárnej hypercholestrolémie pre pacientov, ich príbuzných, lekárov a všeobecnú verejnosť
  • usilovať sa o úzku spoluprácu s praktickými a odbornými lekármi, medzi ktorých klientelou sa nachádzajú pacienti s familiárnou hypercholestrolémiou

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VISION

Rodiny s FH (Families with FH) is a patient association that has been founded to support patients with familial hypercholesterolaemia (FH) and their family members. The main aim of the association is to promote personal contact and exchange of experience between patients with FH, their family members and their physicians and thus to help them better understand the disease and to increase awareness of the disease both in general and throughout the professional Slovak community.

WHAT WE DO

Our work aims to:

  • create the possibility for joint meetings of FH patients, their family members, health care professionals and supporting persons
  • organise seminars, lectures and press-conferences focused on FH for patients, physicians and for lay members of the public to raise awareness about FH
  • support close collaboration between general practitioners and specialists dealing with patients with FH

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Spain

Mª Teresa Pariente
General Álvarez de Castro,
14 1ºE
28010 Madrid
Tel. +34 91 5570071/5042206
http://www.colesterolfamiliar.org

MISIÓN

Informar, detectar y apoyar a las familias con Hipercolesterolemia Familiar (HF) para prevenir la enfermedad cardiovascular prematura.

VISION

Ser un referente en las hipercolesterolemias genéticas

El objetivo principal de la FHF es sensibilizar a las familias con HF, a los profesionales de la salud y a las autoridades sanitarias entre otros, sobre este trastorno genético que afecta a más de 100.000 personas en España, y así, prevenir la enfermedad cardiovascular prematura. Igualmente, la FHF, proporciona información a las familias con HF y a todos sus grupos de interés, a través de la acción divulgativa: líneas de apoyo telefónico, boletín informativo, folletos y página web, con el objetivo de que conozcan el riesgo del colesterol elevado y la necesidad de tratamiento y control, así como la importancia de una dieta sana y unos hábitos de vida saludables.

La FHF para desarrollar sus objetivos, realiza acuerdos de colaboración con sus grupos de interés, puesto que las acciones conjuntas con la implicación de los pacientes, profesionales de la salud, autoridades sanitarias, y medios de comunicación son necesarias, no solo para que la información llegue de forma más efectiva, sino también para concienciar a los políticos sobre el riesgo de la HF y la importancia de incluirla en la agenda política.

MISSION

To inform, detect and support families with FH, aiming to prevent premature cardiovascular disease.

VISION

To be a reference in genetic hypercholesterolaemias and diseases related to cholesterol.

The FHF is committed to raising awareness of FH as a genetic disorder affecting more than 100,000 people in Spain and thus prevent early cardiovascular disease, since most of them are undiagnosed. FHF also advises and provides information to the families and healthcare providers by means of a telephone helpline, newsletter and website, in order to disseminate information on cholesterol risk, dietary habits and healthy life-styles.

The FHF links its efforts with the collaboration of its stakeholders since the involvement of patients, doctors, health authorities and the mass media is very necessary, as well as lobbying policy makers regarding the recognition of FH risk.

Sweden

FH Sverige
c/o Gunnar Karlsson
Förmansvägen 28
151 47 Södertälje
Tel. 08-335 0573/070 335 0573
http://www.fhsverige.se

VISION

Patientföreningen FH Sverige bildades 2009 med syfte att verka för att personer med ärftligt höga kolesterolnivåer ska kunna identifieras och diagnostiseras samt behandlas redan i unga år.

Patientföreningen ska ta tillvara FH-patienters behov i Sverige oavsett bostadsort, kön eller ålder. Det är av stor vikt att sjukvården fokuseras på förebyggande verksamhet för att därmed väsentligt reducera risken för hjärt-/kärl-sjukdomar bland FH-patienterna.

VAD VI GÖR

Vi har som målsättning att innan år 2020 ska 80 % av de som har FH i Sverige, ca 40 000 personer, vara identifierade och diagnostiserade samt ha erbjudits behandling.

Föreningen deltar aktivt i det globala arbetet för att ta del av andra länders erfarenheter och åstadkomma en likartad vård över hela Europa. Detta är viktigt då svenska FH patienter har familjemedlemmar som bor i andra länder av Europa och behöver tillgång till samma FH kompetens.

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VISION

FH Sweden was founded in 2009 with the aim that people with hereditary high cholesterol levels should be identified and diagnosed as well as treated at as young an age as possible.

We shall safeguard the FH needs of patients in Sweden regardless of place of residence, gender or age. It is of great importance that healthcare is focused on prevention, thereby significantly reducing the risk of heart/vascular diseases among FH-patients.

WHAT WE DO

We are working with the objective that before the year 2020, 80% of people with FH, numbering approximately 40,000, should be identified, diagnosed and been offered treatment.

The Association actively participates in global efforts in order to learn from other countries´ experiences and to provide similar care in Europe. This is important as Swedish Patients have got family members living in other countries in Europe and need access to the same FH-skills.

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Switzerland

Schweizerische Gesellschaft für Familiäre Formen der Hypercholesterinämie (SGFH)
Tel. 061 711 85 82
http://www.sgfh.ch

Vision

Die Schweizerische Gesellschaft für Familiäre Formen der Hypercholesterinämie (SGFH) (gegründet im November 2014) bietet Patienten eine Plattform, auf der sie ihre tägliche Herausforderungen mit anderen Patienten teilen und Unterstützung von einander und von Gesundheitsexperten erhalten können.

Die Organisation bemüht sich, die Wahrnehmung dieser Krankheit auf den öffentlichen, medizinischen und gesundheitspolitischen Ebenen zu steigern, um die frühzeitige Erkennung der Erkrankung und mögliche Therapien zu fördern und somit kardiovaskuläre Ereignisse zu verhindern.

Was wir tun

Die Organisation bietet auf der Webseite und in persönlichen Gesprächen Informationen über die Krankheit und zukünftige Therapieformen, mit dem Ziel Patienten mit familiären Formen der Hypercholesterinämie (FFH) in ihrem täglichen Leben zu unterstützen. Wir veröffentlichen die neusten wissenschaftlichen Informationen und Abstracts medizinischer Events rund um familiäre Formen der Hypercholesterinämie.

Wir wirken gemeinsam mit Ärzten und Experten des öffentlichen Gesundheitswesens und bemühen uns ein Krankheitsbewusstsein in der Ärzteschaft zu schaffen, um den Patientenweg durch einer richtigen Diagnose und frühzeitigen passenden Therapie zu verkürzen.

Unser Ziel ist es, die medizinische Gemeinschaft in Bezug auf einer frühzeitigen Erkennung und Therapie, durch Führung lokaler Fortbildungen, Präsenz an Kongressen, Anlässe und der öffentlichen Kundgebung der Patienteninteressen, zu bilden.

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Vision

La Société Suisse pour des Formes d’Hypercholestérolémie Familiales (SSHF) (fondé en Novembre 2014) propose aux patients une plateforme sur laquelle, ils peuvent partager leurs défis quotidiens avec d’autres patients, se soutenir mutuellement et obtenir le soutien d’experts de la santé.

L’organisation s’efforce d’augmenter la prise de conscience de la maladie au niveau médical et santé publique, par le dépistage précoce de cette maladie, d’activer les potentielles thérapies et par conséquent empêcher les accidents cardiovasculaires.

Ce que nous faisons

L’organisation offre sur la page web et en entretien personnel des informations sur la maladie et les futures formes de thérapies, avec pour but de soutenir les patients avec des formes d’hypercholestérolémie familiales (FHF) dans leur vie quotidienne. Nous rendons publique les nouvelles informations scientifiques et les résumés des événements médicaux autour des formes d’hypercholestérolémie familiales.

Nous agissons ensemble avec des médecins et experts du système de santé publique et nous efforçons d’arriver à une prise de conscience de la maladie dans la profession médicale, pour réduire le parcours du patient au moyen d’un diagnostic correct et un traitement précoce approprié.

Notre objectif est de former la communauté médicale au niveau de la détection et du traitement précoces, en mettant en oeuvre la formation locale, la présence à des conférences, des rencontres et des manifestations publiques dans l’intérêt du patient.

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Vision

The Swiss Society for Familial Forms of Hypercholesterolemia (Swiss FH) (founded in November 2014) offers patients a common platform to share daily challenges, get support from each other and from health care professionals.

The Swiss FH organization aims to raise the awareness for these diseases at a public, medical, and health political level in order to promote the early detection of the disease and possible treatment options by preventing cardiovascular events.

What we do

The organization provides information on the website and in a form of face to face meetings to patients about the disease and future therapy options in order to help patients with familial forms of hypercholesterolemia (FFH) to be able to manage disease-specific problems in their everyday life. We publish on a regular basis the latest scientific information and abstracts of medical events around FFH.

We collaborate with physicians and public health experts and put our effort to create disease awareness in the medical community to shorten the patient journey by providing the correct diagnosis and treatment as early as possible.

Our objective is to educate the medical community with respect to early detection and treatment by holding local lectures, being present at congresses in the field, events and voice the interests of the patients in public.

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Turkey

Ailevi Hiperkolesterolemi Derneği
Mansuroğlu mah 286/3 sokak No.14B
Tower/Bayraklı/İzmir
http://www.ailevihiperkolesterolemi.org/

Yakında eklenecektir

To Follow

UK

HEART UK – The Cholesterol Charity
7 North Road,
Maidenhead, Berkshire
England
Sl6 1PE
Tel. +44 1628 777046
https://www.heartuk.org.uk

About Us

HEART UK- The Cholesterol Charity offers support and help for people living with and affected by high cholesterol, such as FH and other blood fat conditions. The Cholesterol Helpline is run by HEART UK nurses and dietitians. A wide range of written materials is also freely available.

HEART UK supports a network of “Ambassadors”, who are people affected by cholesterol, including FH. They help organise peer-to-peer group meetings, assist in providing a patient perspective in decision-making and campaign in the media and seek to influence our Government on behalf of FH patients.

HEART UK offers education and professional development support, including a highly respected annual Scientific Conference for health care professionals and actively campaigns for service improvements, access to medicines and diagnosis of FH.

Our vision is to prevent premature deaths caused by high cholesterol and cardiovascular disease. We aim to ensure that the majority of UK adults know and understand their cholesterol levels and undertake any necessary action.

Contact details:

Jules Payne, Chief Executive
HEART UK – The Cholesterol Charity
7 North Road, Maidenhead,
Berkshire
England S16 1PE

Tel: +44 1628 777046
E: jp@heartuk.org.uk
Web: www.heartuk.org.uk
Twitter: heartukcharity
Facebook: HEART.UK.CHARITY

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FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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