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-Lancet Commission on Rare Diseases Launched
The Rare Diseases International (RDI)-Lancet Commission on Rare Diseases is a new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) globally by generating evidence-informed recommendations that can be implemented in all countries.
The RDI-LCRD, initiated and hosted by RDI and chaired by Dr. Roberto Giugliani (Brazil) and Dr. Kym Boycott (Canada), brings together 27 Commissioners from 6 continents with a broad range of expertise, perspectives, and experience from fields including academia, clinical practice, health economics, and patient advocacy. By aligning with The Lancet’s mission, this Commission leverages expertise from diverse fields, ensuring that its recommendations will drive impactful change in healthcare policy and practice.
The RDI-LCRD launch coincides with two significant milestones for the rare disease community. This week marks both the start of the month of Rare Disease Day (February 28th) and the opening of the meeting of the World Health Organization (WHO) Executive Board, comprised of 34 Member States, where the World Health Assembly (WHA) Resolution on Rare Diseases will be discussed. The WHA Resolution on Rare Diseases, currently co-sponsored by 21 Member States, will call upon the WHO to develop a 10-year Global Action Plan on Rare Diseases. This presents a momentous opportunity for rare diseases to become a global health priority after many years of being neglected and overlooked. This sets the context for the RDI-LCRD to inform government policies and actions, and to provide stakeholders with the data, insights, and recommendations they need to implement the future Resolution and Global Action Plan at the regional, national, and local levels.
PLWRD around the world continue to face challenges tied to the lack of visibility and recognition of rare diseases, leading to inequities in diagnosis, care, and support. Data on rare diseases is often sparse and fragmented, making it difficult to assess the true burden of rare diseases. The Commission will take a holistic and multidimensional approach to enhance the visibility of rare diseases and PLWRD. The RDI-LCRD will make specific actionable recommendations across five key areas, each supported by dedicated working groups: ethics and morals, data and metrics, societal and healthcare systems, clinical pathways, and healthcare professional competency. PLWRD will be essential partners in the RDI-LCRD: the working groups will invite PLWRD to share their knowledge and experience and identify the services, information, and supports they most need and want.
The Lancet Commission on Rare Diseases represents a pivotal opportunity to address the pressing needs of PLWRD and advocate for their inclusion in healthcare systems globally. The Commission seeks to generate robust data which can be used to inform concrete recommendations that can be implemented around the world and adapted to the local environment. The overarching goal of the RDI-LCRD is to ignite global action that will amplify the voices of PLWRD and ensure that they are seen, heard, and cared for, no matter where they live.
Read the Comment in the Lancet
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.
Brazil announces co-sponsorship of the WHA Resolution on Rare Diseases
We applaud Brazil for co-sponsoring the WHA Resolution on Rare Diseases alongside the Arab Republic of Egypt, Spain, Qatar, France, Malaysia, Chile, Panama, the Philippines, the State of Palestine, Kuwait, and Luxembourg.
As negotiations on the resolution are ongoing, now more than ever, we call on all Member States to support or co-sponsor the WHA Resolution and the Global Action Plan on Rare Diseases ahead of the WHO Executive Board meeting (3–11 February 2025).
The Global Action Plan is critical to ensuring sustainable solutions, greater equity for persons living with a rare disease and making Universal Health Coverage a reality.
Learn more about the Resolution.