At the 2024 World Health Summit in Berlin, Rare Diseases International (RDI) which is a P4H partner 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.
