Breaking News: WHA Resolution on Rare Diseases Adopted
The Resolution on Rare Diseases was officially adopted at the 78th World Health Assembly (WHA78) on 24 May, 2025.
This is a milestone moment for the global rare disease community. The adoption of this Resolution by WHO Member States marks a powerful step forward in ensuring equity, visibility, and inclusion for the 300 million people living with a rare disease around the world.
At Rare Diseases International, we are beyond excited and proud to have contributed to this incredible achievement — a true testament to the strength of collective advocacy and international cooperation. We thank the the 41 Member States who co-sponsored the Resolution — with special acknowledgment to the leadership of Egypt and Spain, who played a key role in driving this initiative forward — and to the 275 civil society organizations who rallied behind this call. Your leadership and support have made history.
Let’s continue working together to turn this Resolution into real action at national and regional levels.
Find out more information at the following link about the WHA Coalition’s announcement on the adoption of the Resolution.
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RDI Partners with Hong Kong Genome Institute for Second In-Person Meeting of the RDI-Lancet Commission on Rare Diseases
Rare Diseases International (RDI) and the Hong Kong Genome Institute (HKGI) announce a landmark partnership to co-host the second in-person meeting of the RDI-Lancet Commission on Rare Diseases (LCRD) in Hong Kong in November 2025. The meeting, which will bring together 27 commissioners from over 20 countries and regions, will build upon the progress made during the Commission’s kick-off meeting held over three days in Geneva, Switzerland in November 2024. The second RDI-LCRD meeting will take place on 18-19 November 2025 alongside the International Genomic Medicine Symposium (Symposium) on 17 November 2025, which will convene distinguished experts, clinicians and scientists to foster knowledge exchange in genomic medicine and rare diseases.
Read the full press release
WHA Resolution on Rare Diseases Recommended for Adoption at the 156th WHO Executive Board
10 February 2025 marked an important turning point for the World Health Assembly (WHA) Resolution on Rare Diseases and the global rare disease community. The #Resolution4Rare has been officially recommended for adoption at the 78th WHA by the 156th WHO Executive Board.
RDI applauds the decision of the 156th WHO Executive Board (EB) to recommend the adoption of the Resolution on Rare Diseases to the 78th World Health Assembly (WHA) in May 2025. This marks a significant milestone in the global effort to improve the lives of over 300 million persons living with a rare disease (PLWRD) worldwide.
RDI would like to express its gratitude to the Arab Republic of Egypt and Spain for their leadership, and to all co-sponsoring Member States — Brazil, Chile, China, Ecuador, France, Greece, India, Iraq, Jordan, Kuwait, Luxembourg, Malaysia, Pakistan, Palestine, Panama, Philippines, Qatar, Romania, Russia, Slovakia, Slovenia, Somalia, Thailand, and Vanuatu.
RDI also extends its gratitude to the WHO for advancing this resolution, and to the over 200 members of the Coalition and the global rare disease community for their support.
This decision marks the first important milestone towards securing the adoption of the WHA Resolution on Rare Diseases and the Global Action Plan (GAP) at the 78th WHA.
RDI urges all WHA Member States to continue their commitment and collaboration to ensure the successful adoption and implementation of the resolution and the GAP.
WHA resolution on Rare Diseases submitted for consideration by the Executive Board
Today marks an important turning point for the WHA Resolution on Rare Diseases and the global rare disease community. The #Resolution4Rare has been formally submitted for consideration by the Executive Board.
The draft resolution can be read here.
The official submission follows 3 months of intense negotiations by the Member States to agree on the final text to submit.
This represents two major milestones:
- 21 Member States from across all regions of the world have agreed to co-sponsor the Resolution: the Arab Republic of Egypt, Spain, Brazil, Chile, China, Ecuador, France, Iraq, Jordan, Kuwait, Luxembourg, Malaysia, Panama, Palestine, Pakistan, Philippines, Qatar, Romania, Somalia, Vanuatu and India
- Over 180 organizations came together from across the globe to form a Coalition in support of the Resolution
In the words of RDI’s CEO Alexandra Heumber Perry: “This is a critical moment for the rare disease community worldwide. The formal submission of the Resolution reflects the growing global commitment to addressing the needs of people living with a rare disease. We commend the Member States for their leadership and the rare disease community for their unwavering advocacy.”
Antoine Daher joins rdi council of directors as Yann Le Cam steps down
RDI announces that Yann Le Cam is stepping down from his position on the Council of Directors to pursue other professional activities. We would like to take this opportunity to express our deep gratitude to Yann for his many years of leadership and commitment to RDI and the global rare disease movement. Yann’s vision and tireless advocacy were integral to the founding, development and growth of RDI. We thank Yann for his unparalleled contribution to the rare disease community. Yann’s legacy and impact on RDI and the rare disease community will be felt for decades to come.
“Yann’s dedication and leadership have been instrumental into shaping RDI into the global voice for Persons Living with a Rare Disease,” said Alexandra Heumber-Perry, CEO of RDI. “Under his guidance, RDI has strengthened its global impact and established pathways to champion the rights of PLWRD worldwide. We are extremely grateful for the passion and expertise he has shared with us.”
Yann Le Cam will be replaced on the Council of Driectors by Antoine Daher of Casa Hunter, Brazil. Born in Lebanon, Toni, as he is more commonly known, is a Brazilian businessman who has dedicated his life to helping people living with rare diseases in Brazil. He speaks Arabic, French, English and Portuguese and has a Master in Political and Administrative Science. He became a rare disease advocate after his son was diagnosed with Hunter Syndrome (MPS II), an inborn error of metabolism. Toni is founder and president of Casa Hunter, president of Febrararas, the Brazilian Federation of Rare Disease Associations, and co-founder and president of Casa dos Raros. He works closely with the Brazilian Parliament to fight for public health policies and laws that grant a better life for people with rare diseases.
Toni comments, “Being a member of RDI’s board is an invaluable experience for me. It is a unique opportunity to represent 50 million rare disease patients and their caregivers while also learning from the global rare disease community. I am also grateful for the chance to share our local initiatives, such as Casa dos Raros (House of the Rare )”.
As the runner-up in RDI’s 2024 Council Elections, Toni will serve on the Council of Directors for the remainder of Yann’s term, which ends in June 2025, when a new election will be held.
Read the January 2025 Newsletter from Rare Diseases International
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open letter to the WHO Director-General from the Coalition in support of the WHA Resolution on Rare Diseases
On 23 January 2025 the 131 members of the Coalition in Support of the WHA Resolution on Rare Diseases, published an open letter to Dr. Tedros Adhanom Ghebreyesus, Director-General of the WHO, emphasizing the need for a Global Action Plan on Rare Diseases. This plan is critical to ensuring sustainable solutions, greater equity for persons living with a rare disease and making Universal Health Coverage a reality.
The Coalition urges WHO to take key actions:
· Dedicate resources to develop the Global Action Plan.
· Support Member States in adopting and implementing the Resolution.
· Engage PLWRD and their advocates in the process.
· Foster international collaboration.
The Coalition remains committed to collaborating with WHO and Member States to advance this agenda.
Read the full open letter.