Author: RDI

We applaud Luxembourg 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, and Kuwait.

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). Global action is necessary to ensure that rare diseases are recognized and prioritized in health systems worldwide.

Read more about the Resolution here.

At the 2024 World Health Summit in Berlin, Rare Diseases International (RDI) hosted a side-event entitled “Why Prioritize Rare Diseases in Global Health Policy? Aligning with the World Health Assembly (WHA) Resolution on Rare Diseases”, on October 13th, 2024. Representatives from the Ministries of Health of Egypt, France, Spain, and Qatar participated alongside a diverse panel including 4 speakers with lived experience of rare diseases. The event was well attended with over 100 attendees over the course of the event, both in-person and on-line. You can read the event report here to see the event highlights. You can also watch the full event here. Amidst a very productive and insightful discussion, 3 principal takeaway messages emerged:

• A systems approach is needed: rare diseases must be integrated into health and financing systems as part of NCD and UHC frameworks. “Rare diseases should be driving UHC.” 

• It is critical to look at the wider social and economic impacts of rare diseases. “When we are talking about rare diseases we are not just talking about the patients, we are talking about their families, their classmates, their workmates.” 

• This is about political will: By co-sponsoring the resolution countries are putting rare diseases on the agenda at the highest level. “We know that implementation will be challenging but the rare diseases community has the expertise and we are ready more than ever.”

RDI is looking forward to continuing to support Egypt, Spain, Qatar, Malaysia, France, Panama, Chile, and more Member States to make the WHA Resolution on Rare Diseases a reality in 2025. You can find out more about the WHA Resolution initiative here.

We are pleased to announce the results of the recent RDI Council elections. The newly elected officers are as follows:

• Chair: Kirsten Johnson (Fragile X International)
• Secretary: Ritu Jain (DEBRA International)
• Treasurer:  Yann Le Cam (EURORDIS – Rare Diseases Europe)

Kirsten, Ritu, and Yann will bring strong leadership and dedication to their respective roles, helping to advance RDI’s mission to be a strong common voice on behalf of Persons Living with a Rare Disease (PLWRD) around the world, to advocate for rare diseases as an international public health priority, and to represent RDI members and enhance their capacities at regional and national levels.

We would also like to extend our deepest gratitude to Durhane Wong-Rieger for her nearly 10 years of service to RDI as Council Chair. Under her leadership, RDI has grown significantly, championing the needs and rights of individuals with rare diseases globally. Her unwavering focus and tireless efforts have made a lasting impact on the organization and the community we serve.

Please join us in welcoming the new officers and in thanking Durhane for her decade of exemplary commitment and vision.

Download the statement here.