Network Organisations

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

The Belgian Heart League works at the national level to reduce the impact of cardiovascular diseases on morbidity and mortality among the Belgian population. To do so, it distributes scientific information about risk factors and diseases through brochures, posters, press releases and campaigns.

The main goal of the Belgian Heart League is to encourage a maximum of people to live a healthy lifestyle and get their needed medical follow-up. In that context, raising awareness about cholesterol and FH is crucial, considering the lack of general knowledge around those topics and their prevalence among the population.

Федерация “Български пациентски форум” защитава правото на лечение на български пациенти и достъпа им до качествени здравни грижи.
От години работим за заболявнето Фамилна хиперхолестеролемия.
Работата ни е в две посоки. Информираност на пациентите и работа с институции.
Всяка година организираме срещи с пациенти, за да обясним рисковете от заболяването, симптомите, възможностите за лечение. В продължение на 3 години обиколихме цяла България за скрийнинг.
Ние сме в постоянна комуникация с институциите. Първата ни цел беше да разпознаем FH, като социално значима болест и да възстановим средствата за лечение. В момента основната ни цел е да няма отлагаме лечението поради административни проблеми.

Česká aliance pro kardiovaskulární onemocnění (ČAKO) je spolek sdružující pacienty s onemocněním srdce a cév nebo s rizikovými faktory, které mohou tato onemocnění způsobit. Kromě pacientů s FH jde např. o pacienty s vrozenými kardiovaskulárními onemocněními jako jsou kardiomyopatie, arytmické syndromy a dědičné aortopatie, ale také o pacienty s chronickým srdečním selháním nebo fibrilací síní. ČAKO se zaměřuje na vzdělávání, osvětu v oblasti prevence KVO a na advokacii pacientů.

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,

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.

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.

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.

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.

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.

About us

The Israeli Heart Association is a non-profit patient organization focused on supporting heart & cvd patients and their caregivers as well as elevating, promoting and advocating the awareness to Heart illnesses & cvd, and early detection of risk factors of heart and cardiovascular disease  such as : high cholesterol and familial Hypercholesterolemia (FH)  and / or inherited lipid conditions. 

Vision

As a leading Heart and cardiovascular patient organization in Israel , we at the Israeli Heart Association, place great importance in raising awareness in Israel to heart illnesses and CVD major risk factors, such as high cholesterol and lipid conditions (specifically FH, HoFH, Lp(a), FCS), inherited and non-inherited. As well as promoting and advocating the awareness of the importance of educating the public and stake holders to the importance of access to early diagnosis and suitable treatment of risk conditions, so that all those impacted in Israel receive optimal treatment and support, resulting in longer and healthier lives. As such , we have decided to join FH Europe in the understanding that a pan European organization such as EFH will have the power to lead to changes in the European arena and as a member of the EFH , eventually in the local spectrum – Israel.

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

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/.

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.

About Us

The Association of cardiovascular (CVD) patients Healthy Heart unites patients with hypertension, high blood cholesterol, arrhythmia, obesity and other cardiovascular diseases, as well as those who care about the heart health and a healthy lifestyle.

The CVD patients’ Association Healthy Heart pursues ambitious goals to not only teach the public to avoid these diseases or to live with them in a quality way, but also to function as an intermediary to be heard by the governmental authorities when important decisions regarding cardiovascular issues and public health on the whole are being considered.

In September, 2020, Mrs. Rasa Semiotiene was elected chairperson at the inaugural meeting of the Healthy Heart Patients’ Association, established in Kaunas (LT).

Our Mission

Mortality from cardiovascular diseases in Lithuania makes 56 percent. Every third person has certain cardiovascular problems or is already a cardiological patient with cardiac arrhythmias, high blood pressure (hypertension), high levels of cholesterol, overweight or type 2 diabetes, or has experienced a heart attack or stroke.

Our mission is to organize educational seminars, lectures, events, etc. by inviting professionals of medicine, sports or healthy lifestyle for consultancy, and alongside, engage in other educational activities aimed at prevention or reduction of cardiovascular illnesses. We try to provide relevant information on CVD matters on the social media and in person.

We also seek to influence decisions of authorities relevant to the policy of health system in the country. For example, one of the first goals is to fight for more widely available reimbursable medicines for cardiovascular disease treatment.

By joining the FH Europe Network we expect to exchange / share practices with other likeminded Network members (e.g. Newsletter, webinars, events, annual meetings, etc), to be able to design and join pan-European advocacy and awareness campaigns, get access to our partner organizations’ knowledge, trainings, campaigns (e.g. Conferences registrations, free or supported trainings, campaigns toolkits, etc), alongside, we would like to find opportunities for joint projects with other similar organisations. Finally, our target is to gain more visibility internationally and FH Europe’s support in the activities, which are in line with our joint mission.

Let us join FOR THE GOOD OF OUR HEARTS.

The Lithuanian Heart Association (LHA) is a voluntary and independent, non-governmental organization, uniting medical professionals and patients interested in the prevention and treatment of cardiovascular diseases. LHA was established in 1994 by initiative of two well-known professors in cardiology – prof. Aleksandras Laucevicius and prof. Rimgaudas Nemickas. LHA has been taking care of heart patients and medical professionals for over 25 years.

LHA primarily engages in informing the public on the prevention of cardiovascular diseases and by emphasizing crucial risk factors, such as high cholesterol and other lipid conditions, high blood pressure, overweight/obesity, type 2 diabetes, and role of healthy living. Additionally, LHA searches for the governmental support to improve cardiovascular disease prevention measures in Lithuania, provides patient’ and medical professional’ support.

The Department of Patients with Cardiovascular Disease was established in 2010 at the Lithuanian Heart Association and organizes mutual-support clubs for patients suffering from cardiovascular diseases, such as FH and other inherited dyslipidemias.

LHA implements its successful campaigns: ‘World Heart Day’, ‘Go Red for Women’, ‘Word Thrombosis Day’, ‘I promise’ initiative, campaigns around FH awareness, heart attack, arterial hypertension, atrial fibrillation and stroke awareness. Additionally, LHA supports educational activities for medical professionals by organizing different local conferences, providing grants for participation in international congresses and publish research papers.

FH screening in Lithuania

Cardiovascular diseases (CVD) is a major cause of premature death in Lithuania. Lithuanian Health Information Centre of the Institute of Hygiene announced that more than a half of all deaths (52,7%) were caused by CVD in 2020. In 2006 a nationwide Lithuanian High Cardiovascular Risk (LitHiR) primary prevention program has been initiated. Every year more than 260 000 middle-aged individuals without overt CVD are being screened, which covers evaluation of lipid profile as well as other CVD risk factors of every included person. Above 100 000 lipidograms together with other CVD risk factors have been analyzed in detail, and dynamics of these factors prevalence during 10 year period has been evaluated and published in scientific papers.

Dyslipidemia is one of the main CVD risk factors in Lithuania and according to Lithuanian national database, which consists of patients in LitHiR primary prevention program, any type of dyslipidemia was present in 89.7% of all LiTHiR population. Whereas severe hypercholesterolemia (LDL-C ≥6 mmol/l) has been detected in 3.2% (n=2956) of investigated subjects. This may indicate that familial hypercholesterolemia (FH) in Lithuania is extremely highly prevalent, however the lack of general awareness of FH among the public and medical community has determined this condition to be widely underdiagnosed and undertreated.

Therefore in 2016 National Screening Programme for FH in Lithuania was initiated as a part of EAS FHSC – the global FH registry. The coordinating center of FH screening program in Lithuania is Vilnius university hospital Santaros klinikos. Extremely important role in improvement of the program action plays collaboration with various organizations nation- and worldwide. Participation in Competence center of Lipidology (member of MetabERN – the European Reference Network for Hereditary Metabolic Diseases) together with Center of Pediatrics and Coordinating Centre of Children’s rare Diseases. Collaboration with pediatricians, GP’s, geneticists, apheresis specialists. Participation in FHSC and ScreenProFH.

In 2020 Children‘s Hospital (affiliate of Vilnius University Hospital Santaros Klinikos) has become a part of a National Screening Programme for FH in Lithuania. Equally, this program has been included in BioMetabol study. Recently, in 2021 Centre of rare diseases of Lithuania has received a grant for 1000 children (from 5 to 10 years) to be screened for FH.

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.

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.

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.

Stowarzyszenie EcoSerce powstało w listopadzie 2018roku i działa na rzecz pacjentów z chorobami serca i układu krążenia.

Działania Stowarzyszenia koncentrują się na wspieraniu pacjentów kardiologicznych poprzez organizację debat i konferencji, warsztatów w małych i większych miejscowościach oraz kampaniach informacyjnych i edukacyjnych.

Stowarzyszenie EcoSerce jest inicjatorem Porozumienia Organizacji Kardiologicznych – inicjatywy, która zrzesza największe i najbardziej aktywne podmioty pacjenckie działające w obszarze kardiologii.

Przedstawiciele organizacji biorą aktywny udział w konferencjach, debatach i posiedzenia zespołów i komisji parlamentarnych z zakresu kardiologii i potrzeb pacjentów.

EcoSerce jest inicjatorem Kampanii „TeleSerce – serce pod kontrolą” oraz organizatorem konferencji „Karta praw pacjenta z niewydolnością serca – czy Polska jest na nią gotowa?”.

Ponadto Stowarzyszenie jest członkiem Rady Organizacji Pacjentów przy Rzeczniku Praw Pacjenta oraz Global Heart Hub – międzynarodowego podmiotu zrzeszającego organizacje pacjentów z całego świata.

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.

To Follow

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.

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

Slovenian Heart Foundation

The Slovenian Heart Foundation is an organization working in the public interest, in the field of health and research. In December 2012, the Slovenian Heart Foundation established a Network of non-governmental organizations in the field of public health called ” Network 25×25″, which is active on advocacy about public health, health system, patient’s rights, etc.

The Slovenian Heart Foundation carries out activities in the fields of raising awareness of members and the general public on cardiovascular diseases, prevention, and better quality of life amongst patients with already existing cardiovascular disease.

Together with its 11 branch offices, the Slovenian Heart Foundation carries out numerous preventative measurements with consultations at consultation offices and also on the field (in public places, such as supermarkets and offices).

Slovenian Heart Foundation’s major public activities and campaigns:
Blood Vessels Day, European Stroke Awareness Day (in collaboration with the Association of patients with cerebrovascular disease),
European Heart Failure Awareness Day,
World Heart Day,
World Thrombosis Day,
Familial hypercholesterolemia (FH) Week and World FH Day
World Heart Day
World Stroke Day (we collaborate with the Association of patients with cerebrovascular disease)
World Diabetes Day (we collaborate with the Slovenian Diabetes Association).

Individual consultations: via the telephone, online forum, and personal consultations, workshops for self-help, and CPR courses.

Lectures for the general public and workshops for primary and secondary schools: we carried out over 110 events altogether across Slovenia. For promoting a healthy lifestyle and prevention of CVD we use our mascot, Heart Bimbam.

Informing the public, advocacy and raising awareness on prevention and cardiovascular diseases
Slovenian Heart Foundation also releases magazine “Za srce” since 1991. It also publishes various promotion material about CVD and prevention, eg. a leaflet and a poster accompanying World Heart Day and other publications: https://zasrce.si/rubrika/publikacije/
Publishing is one of the more important activities of the Foundation. With issuing the Za Srce magazine, we keep in regular touch with our numerous members across Slovenia. The magazine includes 7 issues, with each issue having 8,000 printed copies. The magazine is run by an editorial board under the management of Aleš Blinc, Prof. Dr., MD.

Foundation also raises awareness about CVD and healthy lifestyle through the website https://www.zasrce.si, and social media (Facebook, Instagram).

The foundation also issues promotional videos, eg.:

• 3 Bad Habits of Healthy People, including billboard posters around Slovenia: – https://www.youtube.com/watch?v=HTxT7mogTj4
• Children in the City – https://www.youtube.com/watch?v=_P2IuggBmC4
• Look away from the screens«, which raises awareness of addiction to digital technology – https://www.youtube.com/watch?v=ArSTQDB5fII

The Foundation also reaches out to the public via well-established press releases and press-conferences on the fields of a healthy lifestyle and CVD prevention, collaborating with the radio and TV stations as well. That is why the Foundation also promotes its activities and content through Network 25×25.

Within Network 25×25 and newly formed NCD Alliance Slovenia, the Foundation also works on the advocacy of a healthy lifestyle not only amongst the public but also amongst decision-makers as well.

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.

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.

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.

Ailevi Hiperkolestrolemi Derneği, hastalığın farkındalığını artırmaya yönelik eğitim ve araştırma odaklı bir hasta derneğidir.
Derneğin merkezi İzmir’dir.

Dernek, AH hakkında eğitim vermeyi , hastaların yaşam kalitesine katkıda bulunmayı amaçlar. Gerek hastane ve doktorları, gerekse toplumu AH konusunda bilinçlendirmeyi hedefler.

Hastaların ekonomik, sosyal,kültürel, hukuki, mesleki eğitim gibi alanlarda çıkarlarının korunması ve yaşam kalitesinin artması yönünde faaliyetlerde bulunur.

AH hastalarının ve ailelerinin uygun tedavi merkezlerine yönlendirilmesi ve aralarındaki dayanışmasının artırılması için çaba gösterir.
Hastalıkla ilgili güncel bilgilere ulaşmalarını sağlar. Yurtdışındaki benzer derneklere üye olarak, uluslararası bilgi akışı ve dayanışmaya katkıda bulunur.

İletişim:
Mansuroğlu Mahallesi, 286/3 Sokak
No. 14B
Tower/ Bayraklı
İzmir

ailevihiperkolesterolemi@gmail.com

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