Rare Diseases International

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Rare Diseases International

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RDI is a strong common voice for Persons Living with a Rare Disease and families worldwide and across
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01/09/2026

Innovative Financing for Rare Diseases: From Concept to Implementation

💡 How do we move from innovative financing models on paper to solutions that work in practice?

Join us for the final webinar in our series on Innovative Financing for Rare Diseases, where we will explore what it takes to turn ideas into sustainable financing mechanisms. It will look at feasibility, governance, stakeholder alignment, and the concrete pathways countries and funders can use to adopt and sustain these mechanisms. The discussion will pay particular attention to how innovative financing can support the integration of rare diseases into Universal Health Coverage frameworks and long-term national strategies, and to the realities of low- and middle-income settings where financing gaps are most acute.

This third session will move the conversation from mapping solutions to putting them into action. It will draw together the insights from across the series and turn them into practical, policy-relevant recommendations for decision-makers.

🗓️ Tuesday, 29 Sept 2026
🕑 14:00 - 15:00h CEST
🔗 Register here: a6caafed-e1fe-452c-ab31-311728d91169@7b242a05-e2fe-4b06-b307-81c76e69db19" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/a6caafed-e1fe-452c-ab31-311728d91169@7b242a05-e2fe-4b06-b307-81c76e69db19

Speakers to be announced soon!

30/07/2026

RDI is hiring! 🌍

Are you looking for a meaningful opportunity to contribute to the global rare disease community? We’re looking for a Governance & Executive Coordinator to join Rare Diseases International.

In this role, you’ll work closely with RDI’s CEO and governing bodies, coordinating governance processes, supporting executive activities, and helping ensure the smooth operation of a truly global organisation.
If you’re highly organised, proactive, enjoy working in an international environment and are comfortable supporting senior leadership, we’d love to hear from you.

💻 Fully remote – applicants must be based in France, Italy or Spain.
🔗 Find out more and apply here: https://lnkd.in/eDYUF_jJ

07/07/2026

👏 We are excited to introduce the RDI Council of Directors for 2026!

Congratulations to our Chair, Secretary, Treasurer, and Board Directors on taking on these important leadership roles:

Chair: Kirsten Johnson, Fragile X International
Secretary: Kelly du Plessis, Rare Diseases South Africa
Treasurer: Diego Fernando Gil Cardozo, ERCAL Enfermedades Raras en el Caribe y América Latina
Trudy Nyakambangwe, Rare Disorders Zimbabwe (Child and Youth Care)
Antoine Daher, Casa Hunter - Associação Brasileira de Doenças Raras
Nadiah Hanim Abdul Latif, Malaysian Rare Disorders Society (MRDS)
Nicole Millis, Rare Voices Australia

We look forward to working together throughout 2026 to drive innovation, collaboration, and meaningful impact for the rare disease community! We’re excited for what we can achieve together 🚀

#2026

02/07/2026

🇰🇪 RDI 2026 Annual Membership Meeting — Day 2

Day 2 in Nairobi brought another full and impactful programme, co-hosted by Rare Disorders Kenya, with members actively engaging across panels, workshops, and community sessions.

🗣️The day began with a panel discussion on Advancing Improvements in Diagnosis, Treatment & Care, followed by an interactive workshop on the consultation of the recommendations from the RDI-Lancet Commission on Rare Diseases. A mentorship lunch then provided space for connection and exchange across the community.

🤝In the afternoon, members took part in global programme consultation and the Annual General Assembly, alongside dedicated sessions for the RDI Youth Leadership Programme members focused on co-creation, advocacy, and strengthening identity as advocates.

🏆We closed the day with the Aurora Awards Gala, celebrating inspiring initiatives featured on the Mapping Rare platform. During the gala, we also premiered Ida’s documentary, highlighting the journey of one of our RDI YLP members.

30/06/2026

🇰🇪 Welcome to Day 1 of the RDI 2026 Annual Membership Meeting in Nairobi, Kenya!

Members from around the world are coming together for the RDI 2026 Annual Membership Meeting, co-hosted by Rare Disorders Kenya, to begin three days of connection, learning, and collaboration.

🗣️Today featured member presentations, providing a powerful space to share experiences, progress, and priorities from across our global community.

We are excited to welcome everyone as we come together to share, reflect, and co-create!

22/06/2026

📢 WHA79 RDI Side Event Report is Now Available!

Our WHA side event brought together global stakeholders to discuss how inclusive, people-centred health and social systems can better support people living with rare diseases and ensure Universal Health Coverage leaves no one behind.

Co-hosted by the IFPMA, the Hong Kong Rare Disease Collaborative Network, and the Forset Hayah Foundation for Rare Diseases, and held under the patronage of the Arab Republic of Egypt and the Kingdom of Spain, the event reflected strong cross-sector and cross-regional engagement and collaboration. The discussions reinforced the importance of the implementation of the and highlighted the broad societal benefits of designing systems that meet the needs of people living with rare disease.

We are pleased to share the official event report, capturing the key insights, recommendations, and next steps from this important dialogue.

📄 Access the report here:https://www.rarediseasesinternational.org/wp-content/uploads/2026/06/WHA-79-2026-Side-Event-Report.pdf

11/06/2026

📢 Event Report Available!

🌍 The 2nd International Conference on Clinical Research Networks (CRNs), organised by ERDERA, Rare Diseases International (RDI), and IRDiRC, brought together the global rare disease community to advance innovative clinical research solutions, with a special focus on low- and middle-income countries (LMICs).

The hybrid event fostered collaboration among researchers, clinicians, patient advocates, and policymakers to strengthen clinical research networks and accelerate impact for people living with rare diseases worldwide.

📄 Read the event report to explore key insights from organisers and speakers, and discover how CRNs are shaping the future of rare disease research and care!

🔗 Access the event report here:https://www.rarediseasesinternational.org/wp-content/uploads/2026/06/CRN-Conference-Final-Report.pdf

10/06/2026

📣 Speaker Announcement | Innovative Models Reshaping Access to Diagnosis, Treatment and Care

Scientific and medical advances in rare diseases are accelerating — yet equitable access to diagnosis, treatment, and care remains out of reach for millions of people worldwide.

This webinar takes a practical, solutions-driven approach, exploring how innovative financing models can help close these gaps. From venture philanthropy and blended finance to public-private partnerships and outcome-based models, our speakers will share real-world insights and global case studies.

🗣️ Meet the speakers:
Susan Horton, Professor Emerita, School of Public Health Sciences, University of Waterloo
MEDICI ANDRE, Global Health Economist & Former Senior Health Economist, The World Bank Group
Prasanna Shirol, Co-founder & Executive Director, ORDI
Michelle Teo, Chief Investment Officer, MedAccess
Robin Durand, Project Lead, RDI
Flaminia Macchia, Interim Executive Director, RDI

🗓 Thursday, 18 June 2026
⏰ 14:00–15:00 CEST

👉 Register here: 521e6060-7a67-4a0b-802a-5d7e00d3bc7d@7b242a05-e2fe-4b06-b307-81c76e69db19" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/521e6060-7a67-4a0b-802a-5d7e00d3bc7d@7b242a05-e2fe-4b06-b307-81c76e69db19

09/06/2026

Strengthening the Global Rare Disease Community at ECRD 2026 🇨🇿

RDI team members Alanna Miller, Global Policy Lead, and Monica McClain, Senior Global Programme Manager, were happy to join more than 800 participants from across Europe and around the world at European Conference on Rare Diseases and Orphan Products 2026 in Prague.

🗣️ Their participation in this event contributed to a vibrant and inspiring space for collaboration and progress, reinforcing our shared commitment to improving the lives of people living with a rare disease. They were pleased to meet many members, partners, and new connections during two days of deep conversations and exchanges.

🌐 Alanna Miller gave a short presentation at the Pre-Conference Workshop on the European Blueprint for Rare Diseases. She spoke about RDI’s regional engagement framework and how the regional work will be critical to inform work at all levels, particularly as we look to the development of the Global Action Plan on Rare Diseases to be developed by the WHO. This concrete workshop served as an excellent presentation and launch of the European Blueprint for Rare Diseases, summarizing top EU and global priority actions for rare diseases.

Thank you to EURORDIS-Rare Diseases Europe for organizing this event and for the invitation to participate in the workshop. We look forward to seeing the impact of the European Blueprint for Rare Diseases!

09/06/2026

🗳️ 2026 RDI Council Elections – Voting Now Open

Voting is now open for the 2026 RDI Council Elections. 13 candidates have been nominated for three available Council seats! We encourage all eligible members to take part in this important governance process and help shape the future of RDI 🌍🤝

📩 Voting instructions have been sent to the nominated representative of each Full Member Organization. Voting is open from 9 to 24 June.

Make your voice count and help shape RDI’s future. Your Vote Matters! 💙

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