Panama’s leadership in becoming the first Latin American Member State to co-sponsor the resolution shows the global momentum behind the initiative and the impact that it will have for PLWRD across the world.
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New Council Officers Elected
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.
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Rare Diseases International Admitted into Official Relations with WHO
Rare Diseases International (RDI) is pleased to announce that it was admitted into official relations with the World Health Organization at the 155th 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.
RDI launches mapping rare for rare disease day 2024
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.
RDI Participates in the 2023 APARDO Conference alongside Rare Disease Groups From Across Asia
RDI CEO Alexandra Heumber Perry participated in the 2023 Asia Pacific Alliance of Rare Disease Organisations (APARDO) Conference from 24-26 November. The event, co-organized by the Malaysian Rare Disorders Society, brought together 150 stakeholders from 15 countries across the Asia-Pacific region, including Malaysia, Indonesia, India, Korea, Nepal, China, Hong Kong, the Philippines and Australia.
The conference was a testament to the power of grassroots advocacy, peer-to-peer learning and a multi-stakeholder approach: APARDO members, partners and experts shared inspiring experiences, success stories, and promising ongoing initiatives.
The Malaysian Ministry of Health, leading by example, pledged to leave no one behind by including PLWRD in its health priorities, including setting up a specific fund for rare diseases and calling for a global framework for rare diseases.
Conference speakers underlined the value of treatment and the importance of investing in newborn screening, diagnosis and care for rare diseases, as well as the value of economic social burden data.
PLWRD shared their challenges and solutions, showing that each rare disease has its specificities, but that patients and carers are the drivers in meaningful patient care pathways. Further, real-world data, from the patients and by the patients, is critical for increasing patient-centered, affordable and accessible therapies.
The conference emphasized the need for a global framework for action to take advantage of the fertile ground of the moment for translating commitment into impact at the regional, national and local levels and the critical role that APARDO members and other regional alliances play within the rare disease ecosystem.