FH Europe Foundation is excited to announce our attendance at the prestigious EURORDIS Black Pearl Awards on Monday, 24 February 2025, in Brussels.
This annual event, taking place in February, which also marks the occasion of Rare Disease Day, celebrates the outstanding achievements of people living with a rare disease, along with those who go the extra mile to make a difference in their lives.
The awards celebrate hard work, innovative thinking and dedication to the rare disease community.
This year, in recognition of the of the advocacy efforts by the FH Europe Foundation Ambassadors, we asked the Ambassadors living with FCS and HoFH to nominate one from each group to attend the event and to represent the community raising awareness of the rare familial hyperlipidaemias. We are proud to have two of our exceptional patient ambassadors nominated to attend in person along with our Community Engagement Manager.
Representing the FCS community, we have Helga Davidson from Scottland, whose dedication to raising awareness and FCS community support and education has made a significant impact over the past months. Joining her is Athanasios (Thanos) Pallidis from Greece, representing the HoFH community. Thanos's commitment to the cause is truly remarkable, having been nominated for the EURORDIS Young Advocate Award in 2021 for his tireless efforts in raising awareness about HoFH while managing the condition himself. His passion has contributed to improved global FH policy, patient advocacy, and increased awareness among the European medical community. Thanos was among three finalists. Unfortunately, due to COVID-19 restrictions in 2021, he was unable to attend the ceremony in person as it was held online. This year's event presents a special opportunity for him to experience the full impact of the Black Pearl Awards firsthand.
Familial Chylomicronaemia Syndrome (FCS) and Homozygous Familial Hypercholesterolaemia (HoFH) are two rare and serious familial lipid disorders.
🔹 FCS is a genetic condition that causes an extreme build-up of triglycerides in the blood, leading to painful and debilitating symptoms, including severe abdominal pain, recurrent pancreatitis, and chronic fatigue. With strict dietary restrictions and a significant impact on daily life, those living with FCS face immense challenges and a critical need for better treatment options and awareness.
🔹 HoFH is the most severe form of familial hypercholesterolaemia, a genetic disorder that results in dangerously high cholesterol levels from birth. Without early diagnosis and intervention, individuals with HoFH face a high risk of premature cardiovascular disease, often experiencing heart attacks or strokes at a young age. Access to specialised care, innovative treatments, and global awareness are crucial in improving outcomes.
Raising awareness and advocating for these communities is at the heart of FH Europe’s mission. The Black Pearl Awards provide an invaluable platform to spotlight these conditions, connect with key stakeholders, and drive forward the conversation on research, policy, and patient support.
Accompanying the patient Ambassadors will be Emma Print, FHEF’s Community Engagement Manager. Emma will use this valuable opportunity to connect and network with other peers from the international rare diseases community. “I believe this will be a very inspiring event! I look forward to meeting other incredible advocates from the rare diseases community and learning from them. I am sure we can put those insights into good use with the FHEF wider community, furthering our mission, across all disease areas.”- said Emma.
Stay tuned for updates and highlights from the EURORDIS Black Pearl Awards 2025!
FH Europe Foundation proudly supports Rare Disease Day. We invite you to register for our Rare Disease Day webinar and participate in our campaign.
Related topics: Vote Thanos 2021
We are following up once again with some exciting news. After several sessions of intense discussion, debates, and negotiations, the Member States of the World Health Organisation Executive Board made a decision to recommend the adoption of the World Health Assembly Resolution on Rare Diseases to the 78th WHA in May! The discussion was resumed once Member States made a decision on the financing issue. You can read RDI’s full statement following this result here.
A Significant Milestone for Rare Diseases
This marks a crucial achievement for the rare disease community. With 26 total cosponsors now and 224 organisations part of this coalition, it is evident that momentum is growing, and rare diseases are on their way to becoming a true global health priority. FH Europe Foundation is proud to be part of this coalition, working alongside global partners to push for meaningful change and improved care for those living with rare diseases.
What’s Next?
While this is an important step forward, there is still work to do! The Executive Board has recommended the adoption of the Resolution to the World Health Assembly in May 2025, but it is not yet officially adopted. We must continue to build momentum and support to ensure the successful adoption and implementation of the Resolution at the 78th WHA in May, where all Member States will vote on its adoption.
In the run-up to the WHA, we urge Member States to enhance and maintain their commitment and collaboration to secure the adoption and implementation of the WHA Resolution on Rare Diseases and the Global Action Plan. You can join this call by sharing our posts on social media and making sure that the voices of People Living With a Rare Disease (PLWRD) are heard.
How You Can Stay Engaged
If you missed the Executive Board meeting but would like to watch the discussion and decisions, you can rewatch the Executive Board meeting sessions via this link. The WHA Resolution on Rare Diseases was discussed during Sessions 4, 5, and 18 under agenda item 6 (UHC).
We will follow up soon with our next steps leading up to the WHA and how the coalition can continue to support this initiative. In the meantime, thank you all once again for your dedication and support—this is a win for all of us.
Coalition Update
We also want to share our updated coalition logo with you. It is incredible to see how much this movement has grown and how many voices have united to advocate for rare diseases on the global stage.
Let’s continue pushing forward together! As part of our request, we'd love for you to share any updates you come across and tag us or forward them to us directly. The more eyes and ears, the easier it is for us to stay informed and keep track!
Click here to learn more about WHA World Health Assembly.
Click here to learn more about WHO - World Health Organization (WHO).
Explore the highlights from FH Europe's January 2025 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
FH Europe Foundation is thrilled to welcome the Croatian Dyslipidemia Patients Association into our vibrant community network of patient organisations. This exciting addition marks a significant milestone in our collective efforts to combat cardiovascular diseases and raise awareness about familial hyperlipidaemias.
Founded on 11th December 2023, the Croatian Dyslipidemia Patients Association is spearheaded by Iva Prgomet, a young HeFH patient and the association's president, with invaluable support from Professor Ivan Pećin.
Their mission is crucial, given that cardiovascular diseases remain the leading cause of death in Croatia, with every second person succumbing to unrecognised and unregulated conditions such as arterial hypertension, diabetes, and familial hyperlipidaemias.
Croatia has been blazing a trail with its innovative awareness campaigns, setting a shining example of excellence within our community. The Croatian Dyslipidemia Patients Association presentation at the FH Europe Foundation 2024 Annual Network Meeting in Vienna showcased their remarkable achievements and inspired fellow members.
Their initiatives have been both creative and impactful. The recent Zagreb Advent Run, which saw over 4,000 participants 'hunting for the silent killer', exemplifies their dynamic approach to raising FH awareness. Regular cholesterol and blood pressure tests for the general public, encouraging people to 'know their numbers', have become a cornerstone of their outreach efforts.
Their public health campaigns have been far-reaching, utilising public transport and billboards across Zagreb to spread their message. Their 'Do you know your number' and 'The Hunt for the Silent Killer' campaigns have resonated strongly with the public, helping to address the concerningly low 5% detection rate of dyslipidaemia in Croatia.
Looking ahead, we are delighted to announce that our 2025 Annual Network Meeting will be co-hosted with the Croatian Dyslipidemia Patients Association in Zagreb. This collaboration promises to be a fantastic opportunity for knowledge sharing and strengthening our collective impact.
The Croatian Dyslipidemia Patients Association's goals align perfectly with our mission: raising awareness, supporting patients, educating youth about the importance of exercise and healthy eating, improving patients' quality of life, and advocating for better therapy availability.
We at FH Europe Foundation are excited about this partnership and the potential it holds for advancing our shared objectives. Together, we look forward to making significant strides in the fight against dyslipidaemia and cardiovascular diseases across Europe.