
Network of healthcare professionals, researchers, and patient associations dedicated to the care of rare blood cell and erythropoiesis disorders.
A
CSR Analysis score
The organization is among the top 5% of organizations with the most committed CSR positioning, among comparable organizations.
+160,000
Total organizations analyzedAnalysis by axis
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Methodology: Score calculated according to 6 CSR themes (Carbon, Biodiversity, Circular Economy, Sustainable Investments, Governance, Social Impact)
Sources: Public data, CSR reports, documented initiatives, official databases
Last update: July 2026
This analysis is not yet available in English. Please see the French version.
Leading organizations
ern ithaca
B
European network focused on rare malformation syndromes, intellectual and neurodevelopmental disorders. Organizes events, webinars, and symposiums to promote research and collaboration among healthcare professionals, researchers, and patient groups.
Filnemus
B
Healthcare network focused on rare neuromuscular diseases, providing patient care pathways, diagnostic tools, therapeutic trials, and research.
EURORDIS-Rare Diseases Europe
B
Advocacy and policy development for people living with rare diseases in Europe, connecting and mobilizing stakeholders to improve their lives.
Initiatives identified among leaders
Mise en place d'une politique nationale et européenne pour les maladies rares
“Mise en place d'une politique nationale et europée...” - FilnemusInvestissement dans les infrastructures de recherche et l'innovation
“EURORDIS-Rare Diseases Europe investit dans les in...” - EURORDIS-Rare Diseases EuropeDéveloppement d'une approche holistique pour les soins aux patients
“Développement d'une approche holistique pour les s...” - ern ithaca74% of similar organizations communicate on CSR issues
+241 initiatives collected from 50 similar organizations
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