Mapping Rare Webinar
2026-02-17 15:00 - 16:00 UTC
In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community!
In this special webinar, RDI will spotlight inspiring Mapping Rare projects from around the world, showcasing creativity, the power of community, and the voices making rare diseases visible.
🗓️ 17 February 2026
🕒 3–4pm CET
📲 Register here: https://lnkd.in/db8HRPtj
in English with live Spanish interpreting and multilingual captions
Let’s connect, celebrate achievements, and keep mapping the impact of our global rare disease community

Public Webinar: Is Traditional Health Financing Leaving Rare Diseases Behind
2026-04-23 14:00 - 15:00
How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases?
Join us for a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing gaps and barriers to access, map these challenges to relevant innovative financing mechanisms, discuss enabling conditions for implementation, and inform policy and advocacy actions.
In this first session, we will focus on the structural challenges in current health financing systems — including small patient populations, high treatment costs, HTA limitations, fragmented risk pools, and budget impact concerns — that leave 95% of rare diseases without treatment and millions without access to care. The discussion will explore how these systemic weaknesses contribute to inequities in access to diagnosis, treatment, and care. This session will ground the series in global evidence and set the stage for exploring innovative solutions in the following webinars.
🗓️ Thursday 23rd April, 2pm – 3pm CEST
📲 Registration link
Stay tuned for more details on speakers soon!
This project is being carried out with the support of Fondation Ipsen, under the aegis of Fondation de France.

WHA 79 Side Event - Rare Diseases: a Catalyst for Global Health Transformation
2026-05-20 18:00 - 21:00 | Geneva Graduate Institute, Geneva, Switzerland
Rare diseases expose the stress points of our health systems, revealing gaps in diagnosis, care coordination, innovation, data, financing, and access. More importantly, they offer a powerful opportunity:
If health systems are designed to deliver for rare diseases, they can deliver for everyone.
During the 79th World Health Assembly, Rare Diseases International (RDI)  will host a side-event in Geneva entitled “Rare Diseases: A Catalyst for Global Health Transformation“, which will bring together policymakers, patient advocates, industry leaders, researchers, and global health institutions to explore how achieving UHC requires reaching those who are hardest to reach.
This side event builds on the landmark WHA Resolution “Rare Diseases; a global health priority for equity and inclusion” adopted at the 78th WHA, which recognized rare diseases as a global health priority, and called for the development of a 10-Year Global Action Plan on Rare Diseases (GAPRD). As we move toward implementation of these commitments, it is important to reflect on the transversality of rare diseases and the importance of developing people-centered health systems.
This is about improving the lives of the over 300 million persons living with a rare diseases worldwide, but it’s about scaling innovative solutions and designing systems that are more precise, integrated, person-centred, and equitable.
📍 Geneva Graduate Institute (Geneva, Switzerland)
🗓️ 20 May 2026, 18:00–20:00 (CEST) (Cocktail reception to follow until 21:00 CEST)
Stay tuned for the agenda and speakers! We look forward to convening diverse voices to align on solutions, scale impact, and drive real change across rare diseases and global health.

RDI Membership Meeting: Nairobi, Kenya
2026-06-30 - 2026-07-02 | Novotel Nairobi Westlands, Nairobi, Kenya
RDI’s 2026 annual membership meeting will take place in person in Nairobi, Kenya from 30 June – 2 July 2026. It will be co-hosted by Rare Disorders Kenya.
This event will bring our community together for an engaging programme, featuring:

interactive workshops

capacity building sessions

the Aurora Awards

the RDI Annual General Assembly (AGM)
