FH Europe Foundation is thrilled to announce its official membership in the BBMRI-ERIC Stakeholder Forum as part of the Patients' and Citizens' Pillar. This milestone aligns with our mission to amplify patient voices and foster collaboration in the fight against familial hyperlipidaemias and related cardiovascular and rare disorders. 

About BBMRI-ERIC

The Biobanking and Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium (BBMRI-ERIC) is a European network dedicated to advancing biomedical research through biobanking. It connects key players, including researchers, industry leaders, patients, and biobankers, to foster collaboration and innovation. With 23 member countries and one international organization, BBMRI-ERIC is one of Europe’s largest research infrastructures. 

A biobank is a repository for storing human biological samples—such as blood, tissue, cells, or DNA—alongside critical data related to those samples. These resources are essential for advancing health research and understanding complex diseases like heterozygous and homozygous familial hypercholesterolemia (HeFH and HoFH), elevated lipoprotein (a) (Lp(a)) and familial chylomicronaemia syndrome (FCS). 

Why This Membership Is Important for Our Community

As part of this prestigious forum, FH Europe Foundation will work to advocate for equitable access to biobanking resources and innovative healthcare solutions. 

At the same time, it will enhance awareness about the role of FH, elevated Lp(a) and FCS in cardiovascular health and its implications for European healthcare systems. We believe it will empower our ambassadors and advocates by ensuring their voices guide research priorities and healthcare policies. 

  1. Championing Patient Perspectives in Research
    Our role within the Patients' and Citizens' Pillar ensures that the voices of individuals living with familial hyperlipidaemias are heard in research initiatives. By advocating for patient-centric approaches, we aim to shape research that directly benefits our community.
  1. Strengthening Collaboration
    Joining BBMRI-ERIC connects us with a vast network of researchers, clinicians, and stakeholders across Europe. This collaboration can drive innovation, particularly in the study of inherited lipid disorders, enabling breakthroughs that improve diagnosis and treatment.
  1. Enhancing Research in Rare Diseases
    Access to large-scale biobank data is invaluable for studying rare conditions such as HoFH and FCS. Larger sample sizes allow for more robust studies, helping researchers identify patterns, refine diagnostics, and explore new treatments.
  1. Promoting Standardization and Quality
    BBMRI-ERIC champions the standardization of sample collection, storage, and data management across its network. This ensures consistent, high-quality research outcomes, which are particularly critical in fields like inherited lipid disorders.
  1. Strengthening Commitment to Personalised Prevention and Precision Medicine
    This membership underscores FH Europe Foundation’s dedication to advancing personalised prevention and precision medicine for lipid disorders. By collaborating with BBMRI-ERIC, we aim to accelerate the integration of genetic insights and biomarker data into tailored prevention strategies and individualized treatment plans. Such efforts are essential for addressing the unique needs of patients with familial hyperlipidaemias, paving the way for better outcomes and a more effective healthcare system.

Looking Ahead 

This partnership marks a pivotal step in FH Europe Foundation’s mission to bridge cutting-edge research and patient needs, driving equitable healthcare solutions. 

Stay updated on our journey with BBMRI-ERIC and share in our efforts to transform cardiovascular health research. 

Resources and Links 

 

STAKEHOLDER FORUM Patients and Citizens Pillar
Pic 1. STAKEHOLDER FORUM Patients and Citizens Pillar Members

 

Prepared by Emma Print, 

FHEF Community Engagement Manager  

 

Explore the highlights from FH Europe's October 2024 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health: 

 

Read the Full Newsletter.

On September 27, 2024, the 10th medical day of the Société Libanofrançaise d’Endocrinologie et de Diabétologie (SOLFED) took place in Lyon, France. The event featured discussions on key health issues, including obesity, diabetes, and homozygous familial hypercholesterolaemia (HoFH). A presentation on HoFH by endocrinologist Dr Magda Zaarour highlighted the complexities of diagnosing and treating this rare condition. During her talk, Dr Zaarour also introduced organisations raising awareness about HoFH, including the FH Europe Foundation, with two of our Patient Ambassadors sharing their powerful testimonies.

Chyrel Lichaa's advocacy efforts in Lebanon

Chyrel Lichaa, a HoFH patient from Lebanon, shed light on the significant challenges HoFH patients face due to Lebanon's ongoing economic crisis, particularly the lack of access to critical treatments like LDL apheresis filters. Despite these difficulties, Chyrel has been a fierce advocate for patients, leading a campaign that reached hospital administrators, national key opinion leaders, government officials, and the Ministry of Public Health. Her tireless efforts aim to underscore the importance of patient advocacy in improving healthcare access. Chyrel’s impactful work will be further highlighted when she presents her abstract on this topic at the IAS Symposium in Oman this December. She emphasised the need for strong patient organisations, especially in the Middle East, to support individuals in their daily battles with this condition.

Maria Nassif’s Experience with LDL Apheresis in France and Lebanon

Maria Nassif, a HoFH patient originally from Lebanon but now living in France, shared her personal experience with LDL apheresis in both countries. Maria noted a significant difference between the treatments, explaining that the slower apheresis process in France allows for more efficient cholesterol removal, resulting in lower LDL-C levels. Interestingly, both procedures use the same machine, but it was scientifically proven that a slower blood flow through the filters yields better outcomes. Maria also shared images showing how xanthomas on her knuckles disappeared after just two years of treatment in France, illustrating the effectiveness of consistent, high-quality care. Her journey inspired her to join the FH Europe Foundation, where she now advocates for the sharing of best practices around LDL apheresis.

At FH Europe Foundation, we are proud of our patient ambassadors, Chyrel and Maria, for their courage, advocacy, and dedication to improving the lives of those affected by HoFH. Their stories highlight the importance of patient advocacy and international collaboration to advance treatment options and raise awareness for this rare condition.

Explore the highlights from FH Europe's September 2024 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health: