Egypt Sponsors WHA Resolution on Rare Diseases
Rare Diseases International applauds the Arab Republic of Egypt for sponsoring a resolution entitled “Rare Diseases: A Priority for Global Health Equity and Inclusion” at the World Health Assembly (WHA) 78, to be held in May 2025.
The 300 million Persons Living with a Rare Disease (PLWRD) globally continue to face challenges including delays in diagnosis, limited access to treatments and care, and financial burdens. While many regions and countries have made commendable progress in addressing these challenges, progress has not been consistent across all communities. To systemically and sustainably improve the rare disease ecosystem, collective action through a collaborative and multisectoral approach is crucial. To ensure that UHC indeed entails “health for all”, rare diseases need to be made a global health priority.
This WHA Resolution on Rare Diseases will aim to address the challenges facing the rare disease community through a comprehensive global framework that includes raising awareness, improving diagnosis, enhancing access to care and treatment, and fostering research and development of therapies.
RDI now calls upon Member States to join Egypt in cosponsoring this initiative. By adopting a WHA resolution on rare diseases, Member States can strengthen their positions as leaders in healthcare innovation, cement their commitment to health equity and inclusion, and contribute their respective expertise and resources to improve the lives of PLWRD not only nationally, but globally.
The WHA resolution, and ideally the resulting global action plan, will be the catalyst that urges Member States to work together towards enhancing policy processes, advancing research, accelerating innovation, and improving access to care for PLWRD worldwide, and to ensure that PLWRD are included in the critical work being done to advance UHC and inclusion across the globe.
RDI Awarded Special Consultative Status with ECOSOC
On 24 July 2024, RDI was granted special consultative status with the United Nations Economic and Social Council (ECOSOC).
Consultative status will enable RDI to engage with ECOSOC, the Human Rights Council, and the UN system as a whole in many different ways. For example, RDI will be able to participate in sessions, events and conferences at the UN Headquarters in New York and the UN Offices in Geneva and Vienna. RDI will also be able to submit written statements on topics related to its areas of expertise to be circulated to the Council, and may in some cases be called upon to make oral statements.
RDI is now fully and formally equipped to continue and advance our work of representing and advocating for Persons Living with a Rare Disease at the United Nations.
Read the June 2024 Newsletter from Rare Diseases International
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RDI 2024 Council Elections
One new Council Member was elected and two others were re-elected in RDI’s 2024 Council Elections. The results of the elections were announced at the General Assembly on 18 June.
Nadiah Hanim Abdul Latif of the Malaysian Rare Disorders Society will join the Council as a new member.
Kelly du Plessis of Rare Diseases South Africa will begin a new term as a Council Member.
Ritu Jain of DEBRA International was also re-elected to Council.
We thank Rachel Yang, outgoing Council Member, for her commitment to RDI.
Read the May 2024 Newsletter from Rare Diseases International
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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.
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