Category: Latest News

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.

Rare Diseases International (RDI) is pleased to announce that it was admitted into official relations with the World Health Organization at the 155^th session of the WHO Executive Board held from 3-4 June in Geneva. This status gives RDI new opportunities to contribute expertise, insights and perspectives from the rare disease community to the development of policies and strategies within the WHO framework by increasing awareness on rare diseases and their visibility, identifying needs of the global rare disease community, and mapping available technical resources in rare diseases. It underscores the importance of raising the voices of those impacted by rare diseases and reinforces the principles of patient-centred healthcare within the global health agenda.           

As the global alliance of rare disease organizations around the world, RDI is uniquely positioned to represent PLWRD at the WHO.  The admission of RDI into official relations with the WHO builds upon a previous three-year collaboration and Memorandum of Understanding between RDI and the WHO and recognizes the important role that RDI plays in advocating for the rights of Persons Living with a Rare Disease (PLW)RD) around the world.  

RDI’s collaboration with WHO is framed within a three-year plan to support the WHO’s strategic priority of ensuring that one billion more people benefit from universal health coverage through strengthening advocacy, awareness raising, sharing views from People Living with a Rare Disease (PLWRD), aligned with the Thirteen and Fourteenth General Programme of Work of WHO and providing technical input and expertise to WHO on rare diseases. RDI will continue to provide technical input and support to WHO’s work on rare diseases and advocate for equitable access to essential health services for PLWRD.

RDI appreciates the support from the WHO and the Member States that worked conscientiously and collaboratively toward this very positive outcome, which reinforces the value of the Framework of Engagement with Non-State Actors (FENSA) process.

The official relations status will empower RDI to collaborate even more productively with the WHO and better assist Member States and the rare disease community in enhancing policies and initiatives for Persons Living with a Rare Disease and promote their access to healthcare and services at the global, regional and national levels. It will help strengthen the global response to rare diseases, enhance healthcare outcomes, and foster a more inclusive and equitable health landscape for all.

On the occasion of Rare Disease Day 2024, RDI launched Mapping Rare, a website highlighting the many achievements of RDI’s global community. The first group achievements includes a humanitarian mission to the Ukraine by DEBRA International, an awareness campaign in Malaysia, the creation of a national rare disease network in Canada, a successful campaign to improve education options for children with rare diseases in Tanzania, and much more! Visit the Mapping Rare page to learn more.

The launch of Mapping Rare was celebrated with a webinar featuring all of the participating organizations and three keynote speakers: Dr. Roberto Giugliani, Dr. Rüdiger Krech and Dr. Shinya Iimura. The webinar was viewed by over 250 attendees on Zoom and Facebook Live. If you missed it, you can watch it here:

Do you have an achievement to submit to the map? We will be putting out a new call for submissions soon via our RDI members’ mailing list.