
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.
+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: January 2026
This analysis is not yet available in English. Please see the French version.
Leading organizations
Filnemus
B
Healthcare network focused on rare neuromuscular diseases, providing patient care pathways, diagnostic tools, therapeutic trials, and research.
MCGRE
A
Network of healthcare professionals, researchers, and patient associations dedicated to the care of rare blood cell and erythropoiesis disorders.
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...” - FilnemusÉtude sur l’efficacité d’un traitement innovant contre la drépanocytose.
“Étude clinique de phase 2/3 évaluant l’efficacité ...” - MCGRECréation d'un groupe de réflexion éthique
“Création d'un groupe de réflexion éthique pour dis...” - Filnemus72% of similar organizations communicate on CSR issues
+303 initiatives collected from 50 similar organizations
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