RDI Partners with Hong Kong Genome Institute for Second In-Person Meeting of the RDI-Lancet Commission on Rare Diseases

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Rare Diseases International (RDI) and the Hong Kong Genome Institute (HKGI) announce a landmark partnership to co-host the second in-person meeting of the RDI-Lancet Commission on Rare Diseases (LCRD) in Hong Kong in November 2025. The meeting, which will bring together 27 commissioners from over 20 countries and regions, will build upon the progress made during the Commission’s kick-off meeting held over three days in Geneva, Switzerland in November 2024. The second RDI-LCRD meeting will take place on 18-19 November 2025 alongside the International Genomic Medicine Symposium (Symposium) on 17 November 2025, which will convene distinguished experts, clinicians and scientists to foster knowledge exchange in genomic medicine and rare diseases.

Read the full press release

WHA Resolution on Rare Diseases Recommended for Adoption at the 156th WHO Executive Board

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10 February 2025 marked an important turning point for the World Health Assembly (WHA) Resolution on Rare Diseases and the global rare disease community. The #Resolution4Rare has been officially recommended for adoption at the 78th WHA by the 156th WHO Executive Board.

RDI applauds the decision of the 156th WHO Executive Board (EB) to recommend the adoption of the Resolution on Rare Diseases to the 78th World Health Assembly (WHA) in May 2025. This marks a significant milestone in the global effort to improve the lives of over 300 million persons living with a rare disease (PLWRD) worldwide.

RDI would like to express its gratitude to the Arab Republic of Egypt and Spain for their leadership, and to all co-sponsoring Member States — Brazil, Chile, China, Ecuador, France, Greece, India, Iraq, Jordan, Kuwait, Luxembourg, Malaysia, Pakistan, Palestine, Panama, Philippines, Qatar, Romania, Russia, Slovakia, Slovenia, Somalia, Thailand, and Vanuatu.

RDI also extends its gratitude to the WHO for advancing this resolution, and to the over 200 members of the Coalition and the global rare disease community for their support.

This decision marks the first important milestone towards securing the adoption of the WHA Resolution on Rare Diseases and the Global Action Plan (GAP) at the 78th WHA.

RDI urges all WHA Member States to continue their commitment and collaboration to ensure the successful adoption and implementation of the resolution and the GAP.

Read the full statement here.

RDI Launches Youth leadership programme

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RDI is pleased to announce the launch of the RDI Youth Leadership Programme, an initiative designed to engage and empower young people within the rare disease community. This programme aims to ensure that the perspectives of young leaders are actively represented in global discussions and decision-making processes that shape the future of rare diseases.

Through this programme, participants will:

-Contribute their unique insights and expertise to the rare disease ecosystem

-Build essential leadership skills through capacity-building opportunities

-Foster collaboration across the global rare disease community

By empowering the next generation of advocates, the programme ensures that RDI aligns with the needs and expectations of the next generation and remains relevant in a rapidly evolving world.

Applications Now Open!

Deadline: January 31, 2025

Apply Here

Read the Terms of Reference

If you have any questions about the Programme or if are experiencing any difficulties with your application, please contact gaia.esposito@rarediseasesint.org

The state of palestine and Kuwait join egypt, spain, france, qatar, malaysia, panama, chile, and the philippines in co-sponsoring wha resolution

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The State of Palestine and Kuwait have announced that they will co-sponsor the WHA Resolution on Rare Diseases at the WHA 2025 alongside Egypt, Qatar, Spain, Malaysia, France, Panama, Chile, and the Philippines.

Momentum continues to grow behind this initiative to improve the lives of Persons Living with a Rare Disease through global action. We applaud both the State of Palestine and Kuwait for affirming the need to make rare diseases a global health priority and ensure that no one is left behind.

P4H and RDI announce collaboration to support innovation in health and social protection for Persons Living with a Rare Disease

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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.

Spain sponsors WHA Resolution on Rare Diseases

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Rare Diseases International alongside the member organization Federación Española de Enfermedades Raras (FEDER), applauds Spain for joining the Arab Republic of Egypt and the State of Qatar in sponsoring a Resolution on Rare Diseases at the World Health Assembly 2025:
« Rare Diseases: A Priority for Global Health Equity and Inclusion. »

With 300 million people globally living with rare diseases facing ongoing challenges such as delayed diagnosis, limited access to treatment, and financial burdens, RDI underscores the need for collective and multisectoral action to prioritize rare diseases within global health. The WHA resolution aims to establish a comprehensive global framework to address these challenges by raising awareness, improving diagnosis, enhancing access to care, and fostering research and development of therapies.

Find the the joint Press Note in English here

Find the joint Press Note in Spanish here

Find FEDER’s annoucement here 

We are honored to announce that Dr. Mónica García Gómez, the Minister of Health, will be joining us at our upcoming public webinar on 30 August.

RDI calls upon Member States to join Spain, Egypt and Qatar in cosponsoring this initiative.