Many biases exist in the healthcare system including the mistaken belief that women are more protected from heart disease due to estrogen levels. In addition, FH is commonly misunderstood as well, and standard risk calculators do not take into consideration the increased risk of FH due to lifelong high cholesterol. If untreated, FH can increase the risk of heart disease by up 20 times.
Over the course of a life treatment decisions for women can vary. Special considerations need to be made in the teenage years, again surrounding family planning in the adult years, as well as pre- and post-menopause.
This is one of the key reasons FH Europe, partnering with Erasmus University Medical Center and the Dutch expertise centre FH – Stichting LEEFH from the Netherlands, University of Oslo, Department of Nutrition, National Advisory Unit on FH (NKTforFH), Oslo University Hospital, from Norway, launched an international survey on women and FH.
The aim is to better understand how familial hypercholesterolemia (FH) affects women, their family planning decisions as well as health pre-, during and post pregnancy.
To do that, we need to reach out as many women as possible and have them take the survey.
That will help us to empower women affected by inherited high cholesterol, by providing the needed and right information.
The knowledge on women living with FH is scarce. Help us improve it for you and other women affected by inherited high cholesterol.
The survey is currently available in 16 languages. Click on the language that you want to fill-out the survey in:
A group of 18 multidisciplinary Partners, Including FH Europe Foundation, under the umbrella European Alliance for Cardiovascular Health (EACH) calls for an EU policy response to the most pervasive health threat in Europe: cardiovascular disease (CVD).
“Vote Cardiovascular Health 2024” is an event organised by EACH and highlighting the state of cardiovascular health, costs, and investments in the EU’s 27 countries. It is the centre stage from which EACH Partners call for cardiovascular health (CVH) to be high on the policy agenda of the European Parliament when Members of European Parliament (MEP) gather in Strasbourg, France, this December 11th – 14th.
A dedicated exhibition is complemented by a social media campaign that calls on leaders to #VoteHealth2024 in the upcoming EU elections in May 2024. And for a reason that is alarming: CVD tops the killer leaderboard, causing more than one-third of all deaths in the EU and impacting the lives of some 60 million people. CVD cost the EU an estimated €282 billion in 2021. Cardiovascular and related long-term care accounted for €155 billion (55%) of these costs, equalling 11% of EU health expenditure.
The exhibition will be hosted by MEP Elżbieta Łukacijewska (PL, EPP) and MEP Radka Maxová (CZ, S&D), long-time supporters of cardiovascular health in the EU. The current trio presidency of the Council of the EU (Spain-Belgium-Hungary) is addressing cardiovascular disease for the first time in the EU’s 30-year history, showing leadership on a health crisis that afflicts the whole world. What is needed now is an EU Cardiovascular Health Plan and 27 National Action Plans on CV Health.
The exhibition key goals include:
The event will be officially launched with an Opening Ceremony on December 12th, Tuesday, moderated by Prof Franz Weidinger, on behalf of EACH Secretariat. Following a welcome speech by the hosts - MEP Elżbieta Łukacijewska (PL, EPP) and MEP Radka Maxová (CZ, S&D) - four international patient advocates will take to the stage. Among them Diana Wong (Portugal), Ulrich Janssen (Germany), David Kelly (Ireland) and finally Marc Rijken (The Netherlands), FH Europe Foundation Ambassador joined by his wife and daughter and representing the community of CVD patients affected with elevated Lp(a) and familial hypercholesterolaemia (FH). In addition, FH Europe Foundation community will be represented in person by a small delegation of Patient Ambassadors and the Team.
Cardiovascular disease strikes regardless of age, gender, or income. Burning issues of the day will be ‘top of agenda’ in Strasbourg and EACH is urging cardiovascular health to be among them. MEPs have received a briefing note about the exhibition and will be invited to pledge for an EU-wide response to ensure better cardiovascular health for all their citizens. In addition, MEPs will be interviewed on future health policy that impacts the daily lives of people throughout the continent.
Over the remaining days, our community is asked to engage with their national MEP’s in efforts to raise awareness of the event and to promote more MEP’s visits to the exhibition area, conduct meetings, interviews and take photos with the EACH community, showing commitment to joint effort of establishing a cardiovascular health plan for Europe. Although, the key push is to generate maximum interest and commitment at the exhibition in Strasbourg, this is an ongoing effort which will last till the election day in May 2024.
For more information and support follow #VoteHealth2024 and visit https://www.cardiovascular-alliance.eu/vote-cardiovascular-health-2024/.
Familial Chylomicronaemia Syndrome (FCS) severely affects the body's ability to process dietary fat. Though rare (1-2 individuals per million globally), recent estimates indicate a potentially wider impact (1:100,000 to 1:1,000,000) due to underdiagnosis. Managing FCS requires strict adherence to dietary guidelines: a fat intake of over 20g, limited simple sugars, and no alcohol. Non-compliance heightens the risk of severe abdominal pain and life-threatening pancreatitis for affected individuals.
The webinar provided valuable insights and practical solutions for managing FCS-related dietary challenges. It was led by Jill Prawer, Rare Diseases Project Manager at FH Europe Foundation, aiming to increase awareness and understanding of the difficulties individuals face adhering to the FCS diet.
The webinar featured expert perspectives:
You can download the recipes here.
The comprehensive discussion encompassed not only the intricacies of FCS but also included insights relevant to those living with homozygous FH (HoFH), who also must adhere to a strict, very low-fat diet.
By delving into the complexities of FCS and offering practical solutions, this webinar aimed to broaden awareness and understanding while providing helpful tips and tricks for effectively managing the dietary challenges associated with the syndrome.