In the context of the 78th World Health Assembly (WHA) being held in Geneva on 19–27 May 2025, the European Brain Council (EBC) fully supports the Resolution on Rare Diseases: ‘Rare Diseases: A Global Health Priority for Equity and Inclusion’. Spearheaded by Rare Diseases International and a broad coalition of partners, this initiative acknowledges rare diseases as a shared global public health challenge. It closely aligns with EBC’s ongoing work to advance brain health through initiatives such as the Value of Treatment on Rare Diseases, the Rare Brain Disease Ecosystem or the Rethinking Myasthenia Gravis project among others. The Rare Brain Disease Ecosystem focuses on supporting patients with rare neurological and neurodevelopmental conditions – many of which present early in life, progress chronically, and often lack effective therapies. Rare diseases – approximately 70% of which begin in childhood and many of which manifesting as neurological conditions – present numerous challenges that significantly affect patients and their families. These include a high psychosocial burden, limited understanding of disease mechanisms and substantial delays in obtaining accurate diagnoses. The absence of reliable biomarkers and the scarcity of effective therapies further complicate care. Additionally, the high costs associated with drug development, widespread inequities in access to healthcare and insufficient social support systems contribute to the overall impact.

The WHA Resolution, which has been recommended for adoption by the World Health Organization’s 156th Executive Board, is a timely and critical call to action. It emphasises the need for integrated, inclusive and equitable health systems that can respond to the complex needs of the more than 300 million people worldwide living with rare diseases. EBC supports this call and advocates for the development of a Global Rare Disease Action Plan that will promote early diagnosis, accelerate research and innovation, strengthen care coordination and reduce social and economic disparities.

We encourage all Member States to:

  • Invest in sustainable, data-driven research on rare diseases,
  • Integrate rare disease care into universal health coverage frameworks,
  • Scale up early detection through digital and community-based tools,
  • Foster collaborative ecosystems that include patients, caregivers, clinicians and researchers,
  • Ensure a brain health approach is mainstreamed into rare disease strategies.

EBC remains committed to actively support national, European and global action to improve the lives of people living with rare brain diseases and look forward to the adoption and implementation of a Global Rare Diseases Action Plan.

Learn More About the EBC Initiatives