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