FH community welcomes new Czech Presidency of EU
The international FH community welcomes warmly the Czech Presidency of the European Union
Let’s prevent the preventable together.
Familial hypercholesterolaemia (FH), in simple terms means very high cholesterol, which runs in families. It is a common inherited condition that brings a greatly increased risk of cardiovascular disease (CVD) early in life. In Europe approximately 2.5 million people, including 0.5 million children, are affected. Unfortunately, 90 % of those living with the condition are not aware of it – leading to enormous and unnecessary human suffering – and massive costs to the health system and society. It is a major and avoidable public health issue. We are delighted that the Czech Presidency – with its national focus on prevention and health promotion supports a move to address this in a European context through paediatric FH screening.
FH Europe together with its Network Member organization Diagnoza FH are proud to announce the upcoming meeting “FH Paediatric screening moving prevention from evidence to action: overcoming the barriers to implementation” on 6 September 2022. And we are proud that it will be held in the Senate in Prague under the auspices of the Czech Presidency of the EU, which officially starts on July 1, 2022.
John Reeve, FH Europe President, said “This meeting builds on the successes of the Slovenian EU Presidency high level technical meeting in autumn 2021 which led to scientific and political consensus on the imperative to act now. The upcoming meeting in Prague builds on this and looks to dismantle the barriers to FH paediatric screening happening in practice”.
President of Diagnoza FH, Zdeňka Cimická, added “FH paediatric screening is already recognised as best practice by the European Commission – the challenge is to ensure that this becomes systematic and embedded in health systems across Europe. We are delighted to co-host what we hope to a be a major milestone in achieving this”.
The meeting takes place at an exciting juncture. The Commission has just launched its new initiative on tackling non-communicable diseases (NCDs) called “Healthier Together”, with one focus on cardiovascular health. At the same time the international cardiovascular health community through the European Alliance for Cardiovascular Health (EACH) would like to go a step further with a dedicated Cardiovascular Action Plan, emulating the Beating Cancer Plan, with appropriate focus on non-modifiable CVD risk factors such as inherited high cholesterol, and emphasis on personalised prevention. The commitment to making early FH screening universally available across Europe and therefore preventing the preventable together in the context of cardiovascular diseases and health promotion continues, with the support of many international partners, who have endorsed this event.
Under its EU presidency, Czech Republic is spearheading an initiative designed to enhance cooperation and equity in provision of FH paediatric screening within the EU, where several differing models of care can be recognized within the individual Member States.
The organizers would like to invite relevant stakeholders to engage in the high-level meeting to share experiences and explore potential future solutions and actions. Key participants include policy makers at EU and national levels; patient organizations; representatives of the main professional organizations; regulators and HTA agencies.
- Representatives of the Institutions of European Commission (Commissioner, DG SANTE, DG RESEARCH, DG CONNECT, SGPP) and of the Czech Republic Government;
- Representatives of WHO Europe and OECD;
- Representatives of the French, Swedish as well as Spain Governments (the next presidencies);
- Representatives of EU Member States (EU Council) and neighbouring countries and other European countries;
- Targeted Members of the European Parliament (MEP Heart Group, Screen4Rare, Networks of Parliamentary Advocates for Rare Diseases,) and national MPs;
- Representatives of the Patient Organisations (FH Europe and its Network Member organizations, Global Heart Hub, European Heart Network, European Patients Forum, and other disease specific patient organisations);
- Representatives and Members of the Global FH Advocacy Group under the World Heart Federation;
- Members and Representatives of the Paediatrics Societies, European Public Health Alliance, Health Technology Assessment International (HTAi) as well as Scientific organizations connected to FH and CVD –
- Representatives and Partners of the European Alliance for Cardiovascular Health;
- Representatives of important professional stakeholders (Screen4Rare);
- Representatives of the Pharma and MedTech industry (EFPIA, EUCOPE, MedTech).
An official registration platform to join the event in person or online will open soon.
- To address and assess the fundamental challenges, barriers, and opportunities to implement FH screening across Europe;
- To present the Prague Memorandum, building on the previous high level scientific consensus about the importance of implementing FH Screening programmes now, and agreeing on next steps to ensure a systematic and comprehensive approach to screening in Europe that leaves no-one behind.
You can see the preliminary agenda here
Endorsements to date
- Amsterdam UMC, amc.nl
- Czech Society for Atherosclerosis, https://athero.cz/
- Centre for Innovation in Medicine, ino-med.ro
- Croí, The Heart and Stroke Charity, https://croi.ie/
- European Atherosclerosis Society – FH Studies Collaboration (EAS – FHSC), eas-society.org/page/fhsc
- European Atherosclerosis Society (EAS), eas-society.org
- Global Heart Hub, https://globalhearthub.org/
- Slovenian Heart Foundation, zasrce.si
- University Medical Centre Ljubljana, kclj.si
For more information, please contact:
- Magdalena Daccord, FH Europe Chief Executive firstname.lastname@example.org
- Kristýna Čillíková, Diagnoza FH, Vice President email@example.com
In partnership with Diagnóza FH
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt