FH Europe Heart Beat News – June 2021

Thank you for taking the time to read June’s edition of FH Europe’s Heart Beat.

Right from the start, June has been very busy and packed with important updates. This month, we announce a joint statement from 12 leading CVD organisations to the EU. As the European Atherosclerosis Society hosted its annual conference, we bring the latest about patient online events in local languages by our members, Harteraad – The Netherlands, FHChol – Austria and CholCo E.V – Germany. You can also learn more about HEART UK’s Medical & Scientific Virtual Conference 2021. Last but not least, we report on important developments from our partners – the World Heart Federation Cholesterol Whitepaper, a new rare diseases campaign from Eurordis, #30MillionReasons, and the updated COVID Response Campaign by Global Heart Hub.

Joint Statement to call for an EU plan on CVD

“The EU must act decisively to improve the cardiovascular health of European citizens”

FH Europe is one of 12 European and international health organizations that have signed a joint statement to call on the EU to develop a comprehensive EU Plan on cardiovascular disease, which is the leading cause of death in Europe, affecting millions of people.
Now is the time to act. Alongside our fellow signatories, we stand ready to collaborate with EU Institutions and national governments, to take the necessary steps to improve cardiovascular health and help alleviate the CVD burden for Europe’s citizens. We have a unique policy and financial window of opportunity to invest in better cardiovascular care for citizens across the EU. What we now need is the political commitment to make it happen through an EU policy plan on cardiovascular health.

Read more here

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Women’s Heart Health: An Overlooked Issue

Women’s heart health is an emerging topic in public health, and the risk to females lives is becoming an international emergency. When it comes to heart disease, women are still being left behind. Coronary heart disease is still seen as a “man’s illness”, however in Europe, cardiovascular disease is the leading cause of death in women. In addition, Women with FH remain an overlooked patient group in terms of care and research. Over the past few months, FH Europe has been focused on raising awareness for women’s heart health by holding webinars, endorsed by EAS, the European Atherosclerosis Society featuring guest contributors from across the globe. To conclude this campaign, we are compiling a report on Women’s heart health which will be published with our findings imminently.

Watch this space Women’s Report coming soon….

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FH Europe contributes at EAS Congress 2021

Earlier this month, The European Atherosclerotic Society (EAS) is held its 89th annual congress virtually – live-streaming from Helsinki, Finland. FH Europe was pleased to take part in contributing towards a number of sessions and we will release a full report of the congress and our session highlights in due course. Watch this space!

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FCS Online Event: CholCo e.V. and FHchol Austria

Austrian (FHchol Austria) and German (CholCo e.V.) patient organisations have collaborated to organise an online exchange for Familial Chylomicronemia Syndrome (FCS) sufferers for the second time this year. As FCS is a rare disease, the exchange of information between persons suffering from FCS is extremely valuable.

Event topics and speakers:

• Celebrations and parties despite FCS – lust for food instead of frustration – Ms. Gabriele Skacel, dietologist at the University Clinic for Pediatrics, Vienna General Hospital
• Presentation of the therapeutic options at FCS – Prof. Dr. med. Reinhard Klingel, specialist in internal medicine and sub-area kidney and hypertension diseases, lipidologist DGFF, Cologne

The online FCS meeting will take place on 30th June from 6:00 to 7:30 p.m.on ZOOM which will be held in German language.
To attend, email a request to info@fhchol.at.

View the detailed invitation in German

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Harteraad Webinar: Early detection pays off! Familial Hypercholesterolaemia

Dutch CVD patient organisation, Harteraad, will host a live, online meeting on 30th June on how Early detection of FH is treatable and can prevent many problems later in life. The webinar will be featuring three FH professionals presenting the following topics in an accessible manner:

• The importance of early detection. By Bert Wiegman, paediatrician
• Family research, how does it work? By Danielle Bartels, LEEFH consultant
• FH treatment options. By Erik Stroes, (vascular) specialist

Discover more and register here

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HEART UK’s 34th Medical & Scientific Virtual Conference 2021: Hypercholesterolaemia – familial or not?

HEART UK has converted their annual conference to a purely virtual programme and invites you to participate from the safety and comfort of your home or business. Join the CPD approved annual conference livestream throughout July 2021, featuring interactive sessions on topics including research, scientific and clinically relevant material that can be transferred to patient care immediately.

Discover more and register here

HEART UK upcoming news…

1. After a long HEART UK campaign, the NHS in England is expected to formally adopt child-parent screening for FH in many areas
2. The NHS in England is partnering with HEART UK to deliver a joint education programme on lipids across primary care

Learn more about these important announcements in next month’s Heart Beat!

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World Heart Federation White Paper:- Improving Prevention and Control of Raised Cholesterol: A Call to Action

Published on June 1, the WHF Cholesterol White Paper aims to inform a coherent policy approach to preventing, detecting, treating, and controlling high cholesterol. It describes the condition and its consequences and depicts the current global epidemiological situation.

This White Paper includes a series of recommendations to drive action and progress towards achieving better awareness, prevention, detection, treatment, and control of raised blood cholesterol. Considering that all health systems have limited resources and competing demands, this paper emphasizes the importance of cross-sectoral actions and collaborations.

A big shout out to all the people living with FH and HoFH who have shared their experiences with WHF to help inform this White Paper, and also to our member organizations, who provided valuable contributions towards the paper.

Read the White Paper here

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#30millionreasons

30 million reasons for European action on rare diseases

There are 30 million people living with a rare disease in Europe. Yet, no country can tackle the challenges of rare diseases alone. While great progress has been made thanks to scientific advances and efforts at EU and national levels, too many people living with a rare disease face unmet needs and inequities in accessing a diagnosis, treatments and care, leaving them marginalised in society.

EURORDIS-Rare Diseases Europe is calling on the rare disease community to join the campaign for European action on rare diseases, following the two-year EU backed Rare 2030 Foresight Study. #30millionreasons campaigns for a European action plan on rare diseases to improve the life of every person living with a rare disease in Europe.

Find out more about the #30milionreasons campaign and how to get involved!
The Voice of Rare Disease Patients in Europe
30 Million Reasons Fact Sheet

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When Your Heart Says So, #JustGo

Global Heart Hub: COVID Response Campaign

Global Heart Hub’s COVID Response Campaign is an international collaboration between heart patient organisations aimed at saving lives and reducing disability during the coronavirus pandemic. Supported by National Clinical Societies and international organisations such as the World Heart Federation, International Atherosclerosis Society (IAS), FH Europe and others the campaign has reached millions to date with heart patient organisations and advocates taking part from all over the world. It’s not too late to get involved to help raise awareness and drive action.

The campaign is an international collaboration between heart patient organisations aimed at saving lives and reducing disability during the coronavirus pandemic. The campaign encompasses three important messages: ‘Just Go’, ‘Step Up’ and ‘Just Treat’.

We encourage organisations and advocates worldwide to get involved and spread awareness of this important campaign.

Learn more and download the toolkits today!

Global Heart Hub is also hosting a webinar: Fighting the #1 Killer of Women: Empowering Patients as Advocates’ – Global Heart Hub Inspire Advocacy Speaker Series event.

Taking place on 7th July.
Speakers include:
– Amy Friedrich-Karnik, VP Advocacy and Communication at WomenHeart
– Cecily Foster, Postpartum Cardiomyopathy patient and WomenHeart Champion

Register Here

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Global FH Registry: A collaborative approach to better understand your inherited condition

The European Atherosclerosis Society (EAS) Familial Hypercholesterolaemia Studies Collaboration (FHSC) is an alliance of researchers and/or clinicians from 66 participating countries thus far as we expand to further our global reach.

This collaboration consists of a Coordinating Centre team responsible for the collective activities of this project, with the support of a multinational academic panel of ten experts in the field (Executive Committee) and participation from 79 lead investigators across our global network (Steering Committee).

Our initiative is to help tackle the global burden of FH through collaborative research to influence health policy to refocus on early detection and treatment of this condition, to reduce adverse cardiovascular events and promote the health and longevity of FH patients. We have built the first global FH registry (database) compiled of unidentifiable data on this condition from national, regional and local registries and cohorts from 65 countries thus far to facilitate this research and perform surveillance on FH.

We collaborate closely with FH Europe for representation of FH patients in the FHSC and to co-devise and co-deliver outreach activities such as our recent webinar entitled ‘Global FH Registry: A collaborative approach to better understand your inherited condition’ presented at FH Europe’s open session as part of their annual meeting. Please follow the link to the webinar recorded video https://www.youtube.com/watch?v=QyFA7QTUvSE

We have launched an online worldwide FH patient directory of lipid clinics and patient advocacy groups to help put patients and their relatives in touch with specialist clinicians and peer-support groups. There are currently 84 lipid clinics listed from 30 countries and we shall include more clinics as we further develop this website. Please visit findmylipidclinic.com to access this directory.

Please visit the EAS website for more information about the EAS FHSC https://www.eas-society.org/page/fhsc

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