P4H and RDI announce collaboration to support innovation in health and social protection for Persons Living with a Rare Disease
Rare diseases affect more than just health: they are often a source of significant financial hardship. Individuals with rare diseases face high, often catastrophic, out-of-pocket costs for medical care. Together with travel expenses and lost income for both individuals living with a rare disease and their caregivers, these costs present a massive financial burden for many households.
To ensure effective health coverage, increased access and adequate financial protection for all, we need innovative solutions. That is why the P4H Network and Rare Disease International (RDI) are partnering to enable global advocacy and collaboration to influence and support innovation in social health protection and health financing arrangements. The collaboration aims to investigate the scope, issues, needs, and existing approaches and to frame members’ interests and actions within a global perspective to promote best practices at all levels.
Through this partnership, P4H and RDI will contact P4H country focal persons and regional community facilitators, RDI member organizations, WHO experts, and OECD consultants and professionals to exchange information on national experiences in financing and social health protection of rare diseases. This information and preliminary data will be reviewed, validated and systematized through mapping exercises to develop a shortlist of countries with key sources for detailed information. Then, the rare disease situation in each country will be documented through questionnaires and structured interviews with primary sources.
By documenting the current financing and social health protection structure for rare diseases, existing challenges, and future plans for policy action in each country and region, P4H and RDI will investigate the impact of rare diseases on social health protection and health financing arrangements, along with financial hardship and household catastrophic health expenditure in line with the Sustainable Development Goals indicator 3.8.2 on catastrophic health spending. This data will serve as a valuable source in informing global and national policy initiatives related to Universal Health Coverage and rare diseases, providing opportunities to reduce financial hardship and enhance quality of life for Persons Living with Rare Diseases and their families around the world.
Panama Joins Egypt, France, Spain, Qatar and Malaysia in co-sponsoring WHA Resolution
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.