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Rare Diseases International, 96 Rue Didot, Paris (2026)

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! 💙

05/06/2026

“The real challenge today is not only to innovate, but to ensure that innovation translates into equitable access for all—regardless of where you are born or live.”

This was one of the key messages shared by Alba Parejo, RDI Strategic Engagement Officer, during Únicas Talks 2026, organised by Barcelona Children’s Hospital Sant Joan de Déu and the Fundación ”la Caixa”. This year’s edition focused on recent advances in diagnosis, care models, and therapeutic innovation, while reinforcing the importance of collaboration to address ongoing challenges in rare diseases. The meeting brought together a diverse group of stakeholders—including clinicians, researchers, policymakers, industry representatives, and patient organisations—highlighting the collective effort needed to improve outcomes for people living with rare diseases.

As part of a panel focused on equity in access, Alba contributed both a global and personal perspective as a PLWRD.

🌐 Access gaps remain: despite scientific progress, access to diagnosis and treatment still varies widely depending on geography, resources, and socioeconomic context. Rare diseases, by definition, require international collaboration.

🏥 Systems remain fragmented: limited integration of rare diseases into national health systems means access is not guaranteed. Even where services exist, they are often fragmented, poorly coordinated, and difficult to navigate—placing an additional burden on PLWRD and families.

🗣️ Patients must be partners: people living with a rare disease should not only be recipients of care, but active contributors in shaping research priorities, health policies, and the solutions that affect their lives.

Because in rare diseases, true progress will only be measured when every person—regardless of where they live—has the opportunity to access diagnosis, care, and support, and to be part of the decisions that shape their lives.

RDI

29/05/2026

RDI is pleased to share that last week we officially launched the Task Force on Registries, which will be uniquely designed to bridge the implementation gap for LMICs by offering context-adapted guidance, capacity building and support tailored to diverse resource settings.

🤝 The overarching goal of the Registry project is to collaboratively strengthen global capacity—especially in LMICs—by providing guidance in establishing and operating rare disease registries that are sustainable, interoperable, and aligned with international best practices.

💡 This project will focus on the adaptation and application of existing standards into diverse health systems or outside of them, in the absence of any formal systems. Further, it will center on patient organizations and/or ministries of health as co-creators and primary beneficiaries, where applicable, prioritize real-world feasibility and enable equitable participation in the global data ecosystem to ensure that no country or population is left behind.

We look forward to the collaboration ahead and to advancing more inclusive and sustainable rare disease data systems globally.

28/05/2026

RDI is proud to support our members to attend the EURORDIS-Rare Diseases Europe x ERDERA through our Strategic Engagement Fellowship Programme 🎓

RDI members Diego Fernando Gil Cardozo (Colombia), Mtr. Ronny Garro Ureña (Costa Rica), Parvathy Raman Krishnan (United States), Nuha Elnour (Qatar), RDI Global Policy Lead Alanna Miller (France), and RDI YLP member Maria Antonia Gonzalez Posada (Colombia/Spain), spent the week at this year’s in-person training sessions with the EURORDIS Open Academy in Barcelona together with over 80 fellow advocates from 27 countries who have come together to learn, connect, and build their capacity to lead positive change for the rare disease community. Over the past several months, participants have also been preparing through online courses as part of the programme.

Through this fellowship opportunity, our members are gaining essential knowledge, skills, and networks to enhance their advocacy and make a meaningful difference for their communities worldwide.

27/05/2026

Rare Diseases International was pleased to contribute to the event “Advancing Universal Health Coverage: Learning from Experts, Inspiring Future Health Leaders” during WHA week in Geneva, hosted by IPSF - International Pharmaceutical Students’ Federation and Sigma Theta Tau International Honor Society of Nursing.

RDI was represented by Sara Brambilla, Global Programme Manager, and Nadiah Hanim Abdul Latif, RDI Council Director, who contributed the perspective of the rare disease community to the discussion on Universal Health Coverage and how health systems can better respond to the needs of people living with rare and undiagnosed diseases.

The discussion was a valuable opportunity to connect with allies across health professions, including pharmacists, nurses, and future health leaders. Cross-sector and multidisciplinary collaboration is essential to advance the SDGs and build more equitable, inclusive, and people-centred health systems.

Thank you to the organisers for creating this space for dialogue and collaboration!

27/05/2026

📣 Save the Date | Innovative Models Reshaping Access to Diagnosis, Treatment and Care - Practical examples and global case studies

Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis, treatment, and care remains out of reach for millions of people living with a rare disease.

This webinar offers a practical look at how innovative financing models can help close these gaps. The session will explore a range of financing mechanisms, including venture philanthropy, blended finance, public-private partnerships, solidarity funds, and outcome-based models. Through real-world examples, participants will gain insight into what makes these approaches work, the conditions needed for success, and how models can be adapted or combined across different health systems.

Building on the momentum of the WHA Resolution on Rare Diseases, the series aims to build a shared technical understanding of innovative financing models in the context of rare diseases, assess their feasibility across different country settings, and facilitate structured dialogue toward practical policy pathways.

🗓 Thursday, 18 June 2026
⏰ 14:00–15:00h CEST
👉 Registration link: 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

21/05/2026

Last night’s RDI side event brought together policymakers, patient advocates, industry leaders, researchers, and global health stakeholders for a critical global conversation on building inclusive, people-centred health and social systems that 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 marked a powerful moment of unity and shared commitment across regions and sectors. The discussions reflected the extraordinary momentum behind the , with strong engagement from Member States, civil society organizations, and persons living with rare diseases worldwide, and also highlighted the importance of sustained collaboration, equitable access, and continued political leadership to drive meaningful change for the rare disease community globally.

We sincerely thank all speakers and participants who joined us and contributed to this important dialogue on advancing rare diseases on the global health agenda and building more resilient systems. Together, our community remains united in turning this momentum into tangible improvements in the lives of PLWRD around the world. We are .

👉 Stay tuned for the event report, which will be shared in the coming days.

20/05/2026

📢 Happening today!

🌐 During the 79th World Health Assembly, Rare Diseases International (RDI) will host a side-event in Geneva together with IFPMA, Hong Kong Rare Disease Collaborative Network, and Forset Hayah Foundation, under the patronage of the Arab Republic of Egypt and the Kingdom of Spain.

This global conversation will bring together policymakers, patient advocates, industry leaders, researchers, and global health stakeholders to explore how inclusive, people-centered health systems can ensure Universal Health Coverage leaves no one behind.

Because health systems that deliver for people living with a rare disease are health systems that deliver better care, access, and equity for all.

🗣️ Meet the Speakers:

H.E. Prof. Khaled Abdel-Ghaffar, Minister of Health and Population, The Arab Republic of Egypt
Dr Javier Padilla Bernáldez, Secretary of State, Ministry of Health, Kingdom of Spain
Jerome Weinbach, Deputy director, European and International Affairs, Secretariat general – DAEI (Paris), French social ministries
Dr. Adiratna Mat Ripen, Head of the Cancer Research Centre, Institute of Medical Research, National Institutes of Health, Malaysia
Dr Rüdiger Krech, Director, Environment, Climate Change and Migration a.i. Division of Health Promotion, Disease Prevention and Care, World Health Organization
Kin-Ping Tsang, Co-Founder, Hong Kong Rare Disease Collaborative Network
Anne-Sophie Chalandon, Co-Chair of the ICG RD, IFPMA
Ghada Mounib, Founder & Head of Board of Trustees, Forset Hayah Foundation for Rare Diseases
Dr Kirsten Johnson, Chair, RDI Council of Directors
Ritu Jain, Secretary, RDI Council of Directors
Diego Fernando Gil Cardozo, RDI Council of Directors
Toni Roberts, RDI Youth Leadership Programme member
Flaminia Macchia, Interim Executive Director, Rare Diseases International
Alanna Miller, Global Policy Lead, Rare Diseases International

📍 Geneva Graduate Institute (Geneva, Switzerland)
🗓️ 20 May 2026, 18:00–20:00 (CEST), with cocktail reception to follow until 21:00 CEST
🔗 In-person Registration: https://lnkd.in/eZiWCau9
📲 Online Registration: https://lnkd.in/e93fMRg7

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