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FEDERG support the adoption of the WHA Resolution on Rare Diseases.

Homepage Education FEDERG support the adoption of the WHA Resolution on Rare Diseases.

FEDERG support the adoption of the WHA Resolution on Rare Diseases.

Susana Carvajal Arjona
16 September 2025
Education, Rare Disease, Uncategorized

Earlier this year, a Coalition was formed to support the adoption of the WHA Resolution on Rare Diseases. As we shift to implementation, the Coalition is rebranding to be called the Coalition for Advocacy for Rare Disease Equity (CARE). FEDERG support CARE and RDI members to brief them on the current status of the WHA Resolution, align on the next steps and discuss the different ways members can be involved. The goal is to maintain political and stakeholder momentum beyond the adoption of the Resolution to ensure that the implementation of the Resolution does not stall, and that Member States and the WHO are held accountable to move forward with their commitments, and to provide an opportunity for participants to share their experiences and perspectives on the work to come, as well as ask any clarifying questions regarding the significance of the Resolution, their involvement, and the next steps.

FEDERG contribute to the development of the RDI Strategy 2030. As a valued RDI member, our perspective will help ensure that RDI’s refined strategy aligns with global health priorities, adds value to shared initiatives, and builds on trusted collaboration. FEDERG input will strengthen our relevance, effectiveness, and ability to drive collective impact for persons living with a rare disease worldwide.https://www.rarediseasesinternational.org/vision-mission/#impactstrategy

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FEDERG is the non-profit federation of European associations of patients affected by rare and/or genetic kidney diseases.

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  • FEDERG at the European Parliament event “Safe Hearts, Safe Kidneys: Elevating Kidney Health on the EU Agenda” Friday, 27, Feb
  • Together, 20 patient organizations raise their voices for hope — better diagnosis, treatment, and research for rare genetic kidney diseases on RARE DISEASE DAY 2026 Friday, 27, Feb
  • Alport Syndrome Patient Information Day on September 6th, 2026! Wednesday, 14, Jan

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SearchPosts
Friday, 27, Feb
FEDERG at the European Parliament event “Safe Hearts, Safe Kidneys: Elevating Kidney Health on the EU Agenda”
Friday, 27, Feb
Together, 20 patient organizations raise their voices for hope — better diagnosis, treatment, and research for rare genetic kidney diseases on RARE DISEASE DAY 2026
Wednesday, 14, Jan
Alport Syndrome Patient Information Day on September 6th, 2026!
Sunday, 11, Jan
AIRG, 21st Annual Meeting in Madrid, January 17, 2026
Tuesday, 16, Sep
Members activities Newsletter, volume 2.
Tuesday, 16, Sep
FEDERG support the adoption of the WHA Resolution on Rare Diseases.