Category: Latest News

We applaud Brazil for co-sponsoring the WHA Resolution on Rare Diseases alongside the Arab Republic of Egypt, Spain, Qatar, France, Malaysia, Chile, Panama, the Philippines, the State of Palestine, Kuwait, and Luxembourg.

As negotiations on the resolution are ongoing, now more than ever, we call on all Member States to support or co-sponsor the WHA Resolution and the Global Action Plan on Rare Diseases ahead of the WHO Executive Board meeting (3–11 February 2025).

The Global Action Plan is critical to ensuring sustainable solutions, greater equity for persons living with a rare disease and making Universal Health Coverage a reality.

Learn more about the Resolution.

We applaud Luxembourg for co-sponsoring the WHA Resolution on Rare Diseases alongside the Arab Republic of Egypt, Spain, Qatar, France, Malaysia, Chile, Panama, the Philippines, the State of Palestine, and Kuwait.

As negotiations on the resolution are ongoing, now more than ever, we call on all Member States to support or co-sponsor the WHA Resolution and the Global Action Plan on Rare Diseases ahead of the WHO Executive Board meeting (3–11 February 2025). Global action is necessary to ensure that rare diseases are recognized and prioritized in health systems worldwide.

Read more about the Resolution here.

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 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.

During the 2024 APARDO Conference, Secretary Ted Herbosa of the Philippine Ministry of Health announced the nation’s commitment to co-sponsor the WHA Resolution on rare diseases stating, “Saving people’s lives doesn’t require much; it simply needs humanity and humanism”.

At the 2024 World Health Summit in Berlin, Rare Diseases International (RDI) hosted a side-event entitled “Why Prioritize Rare Diseases in Global Health Policy? Aligning with the World Health Assembly (WHA) Resolution on Rare Diseases”, on October 13th, 2024. Representatives from the Ministries of Health of Egypt, France, Spain, and Qatar participated alongside a diverse panel including 4 speakers with lived experience of rare diseases. The event was well attended with over 100 attendees over the course of the event, both in-person and on-line. You can read the event report here to see the event highlights. You can also watch the full event here. Amidst a very productive and insightful discussion, 3 principal takeaway messages emerged:

• A systems approach is needed: rare diseases must be integrated into health and financing systems as part of NCD and UHC frameworks. “Rare diseases should be driving UHC.” 

• It is critical to look at the wider social and economic impacts of rare diseases. “When we are talking about rare diseases we are not just talking about the patients, we are talking about their families, their classmates, their workmates.” 

• This is about political will: By co-sponsoring the resolution countries are putting rare diseases on the agenda at the highest level. “We know that implementation will be challenging but the rare diseases community has the expertise and we are ready more than ever.”

RDI is looking forward to continuing to support Egypt, Spain, Qatar, Malaysia, France, Panama, Chile, and more Member States to make the WHA Resolution on Rare Diseases a reality in 2025. You can find out more about the WHA Resolution initiative here.