RDI Members Information Session on the WHA Resolution
2025-01-16 14:00 - 15:00 UTC
This webinar will be an opportunity to explain in more detail the background for the WHA Resolution on Rare Diseases, as well as the progress that has been made so far, the current status of the initiative, and next steps.
It will also be an opportunity for members to ask questions and clarify anything about the initiative. to update on the resolution activities, launch the coalition, and discuss next steps in the resolution process.

Global Albinism Alliance : ISCA 2025
2025-01-21 08:00 - 2025-01-24 17:00
Join the Global Albinism Alliance at the 2025 International Scientific Conference on Albinism.
The event will be held virtually from January 21-25.
If you would like to attend and haven’t registered yet, you can register here. The deadline for registration is on 15 January.
Learn more about the programme here.

3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases
2025-02-12 09:00 - 17:00
Instituto Unidos Pela Vida will host the 3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases on February 12, from 9:00 AM to 5:00 PM, BRT. The event will take place at Blue Tree Premium Morumbi in São Paulo, Brazil, and will also be available online via the Congresse.me platform.
The forum aims to provide a platform for discussing Health Technology Assessment (HTA) processes, with a special focus on rare diseases. It will explore the importance of monitoring, the challenges involved, and ways to empower the rare disease community to actively participate in social engagement opportunities.The event will be hosted and moderated by Verônica Stasiak Bednarczuk, founder and executive director of Unidos pela Vida, alongside organization directors Marise Basso Amaral and Cristiano Silveira. The Forum will feature simultenous translation into Brazilian sign language, English, and Spanish. Register here.

RDI PUBLIC WEBINAR: Rare Disease Expertise , Centers and Networks: Results of the Survey
2025-02-12 14:00 - 15:00
Join us to for a public webinar presenting the results of the RDI’s recent survey on rare diseases expertise.
We will share key findings from the survey on rare disease expertise around the globe, including insights into care-providing centers, networks, and collaborations.
If you would like to attend and haven’t register yet, register here.

Rare Disease Day Webinar-From Grassroots to Global: Growing Momentum towards the WHA Resolution on Rare Diseases
2025-02-27 14:30 - 16:00
This year’s Rare Disease Day theme “More than You Can Imagine” reminds us of the milestones we have achieved by working together as a global community — most recently, in our collective efforts to advocate for a World Health Assembly Resolution on Rare Diseases.
There is more power, dedication and commitment in our community than we ever imagined, and we are proud to bring our members, partners and friends together to reflect on our progress — how far we have come, and how far we can go.
Join us for a public webinar on Thursday, 27 February 2025 at 14:30 CET and find out how we can imagine a better future for Persons Living with a Rare Disease — together!
Register now.

RE(ACT) Congress and IRDiRC Conference
2025-03-05 - 2025-03-07 | Brussels Pullman Centre Midi
Continuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition), this conference brings together visionary leaders, distinguished experts, and emerging talents from diverse scientific domains, converging to unveil groundbreaking research, foster dialogue, and shape policies crucial to rare disease research.
Since its inception in 2012, the RE(ACT) Congress, pioneered by the BLACKSWAN Foundation, has catalyzed scientific collaboration and advancement in rare and orphan diseases. Meanwhile, IRDiRC, established in April 2011 under the auspices of the European Commission and the US National Institutes of Health, has been pivotal in galvanizing global cooperation among researchers, funders, and patient advocacy groups within a multinational framework.
This joint venture of the 8th RE(ACT) Congress and the 6th IRDiRC Conference, in partnership with the European Rare Diseases Research Alliance (ERDERA), Eurordis (the European Alliance of Patient Organizations), symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.

5th International Conference on Rare Diseases, Greece
2025-03-27 - 2025-03-28 | Technopolis City of Athens, Athens, Greece
The 5th International Conference on Rare Diseases, organized by RDI Member Rare Diseases Greece, brings together all the key initiatives and stakeholders currently shaping the rare disease landscape with the aim to set a course for the future of rare diseases.

MENA Congress for Rare Diseases 2025
2025-04-17 - 2025-04-20 | Beach Rotana, Abu Dhabi, United Arab Emirates
MENA Congress for Rare Diseases 2025 will take place in Abu Dhabi from 17 to 20 April 2025. It will be the largest event for rare diseases with more than 160 speakers covering variable fields of rare diseases.
You can use the “SPK120” for registration at nominal fee (only 120 AED instead of the regular registration fee of 2400 AED).
For more information and registration please visit the website: https://menararediseases.com/

RDI World Health Assembly Side Event
2025-05-21 18:00 - 21:00 | La Pastorale, Geneva, 106 Route de Ferney, Geneva, Switzerland
Rare Diseases International and partners will hold a side event alongside the World Health Assembly in Geneva, Switzerland on Wednesday, 21 May 2025 at La Pastorale from 6-8:30 PM.
This event will celebrate the significant achievements of our members, community, and partners over the last 10 years and chart the next era of advocacy, policy, research, and care.
With the potential adoption of the WHA Resolution on Rare Diseases, this event presents a unique opportunity to build on the progress our community has achieved and continue towards our goal: Universal Health Coverage for Persons Living with a Rare Disease or condition, no matter where they live.
More information is available here.

RDI Regional Webinar: From WHA Resolution to Action: Next Steps for Latin America and the Caribbean
2025-09-25 17:00 - 18:00
Join us for a webinar co-hosted by ALIBER, Casa Hunter and ERCAL to learn how we can work together to ensure that the WHA Resolution has real impact for Persons Living with a Rare Disease in Latin America and the Caribbean.

Mapping Rare Webinar
2026-02-17 15:00 - 16:00
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)
