📣 Save the Date | Webinar Series on Innovative Financing for Rare Diseases How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases? 🗓️ Thursday 23rd April, 2pm – 3pm CEST  📲 Registration link: lnkd.in/e2NnrDCS

We are pleased to announce that Flaminia Macchia, a long‑standing advocate for the global rare disease community and former Executive Director of RDI from 2020 to 2023, will serve as interim Executive Director during this transition phase. More information: www.linkedin.com/posts/rare-d...

EURORDIS, with the support of RDI, kicked off the European Regional Task Force. The next steps will include collecting all inputs and drafting the document in synergy with the Core Group, which will be presented during the ECRD, taking place in June in Prague. More information: lnkd.in/eeUx8y8E

📣 Save the Date! Join us for a public webinar exploring how rare disease centers are organized and how they function in practice across different countries and health system contexts. 🗓️ 18 March 🕐 14-15 CET 📲 Register here: lnkd.in/exj-NV6p #RareDiseaseCenters #RDI #PatientEngagement #Webinar

📢 Save the Date — Mapping Rare: A World of Impact   In celebration of Rare Disease Day 2026, join us for a global event highlighting achievements from our global community! 🌍💜 🗓️ 17 February 2026 🕒 3–4pm CET 🔗 Learn more about Mapping Rare: lnkd.in/gCWyCBxE 📲 Register here: lnkd.in/db8HRPtj

RDI will be attending the 158th Session of the WHO Executive Board. 📣 We call on Member States to urge the WHO to: 🔹Move forward with the development of the Global Action Plan on Rare Diseases 🔹Provide clarity on timelines and the consultation process 📄 Read our Position Paper: lnkd.in/dad_JY7t

🌍 Calling All RDI Members! Join Us for the Member Open House: RDI's 2026 Action Plan   🗓 Thursday 12 February 🔹 Session 1: 9 CET / 12 PM PST 🔹 Session 2: 15 CET / 9 AM EST 🔹 Session 3 (Español): 16 CET / 10 AM EST   📩 Check your inbox and register for the session that works best for you!

The countdown to Rare Disease Day has started! Are you a Rare Disease Changemaker or do you know someone who is? 🌐   👉 Nominate the person you believe has made the greatest impact by filling out this short form: forms.office.com/pages/respon...   🚨 Deadline for nominations: 13 February 2026

Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action 🌐 🗓️ 15 January 2026 ⏰ 13:30 - 14:45 CET 🗣️ The webinar will be held in English and Spanish (live translation) 📲 Registration Link: lnkd.in/exF6U8z4

📢 Join RDI on 15 January 2026 from 13:30 - 14:45 CET for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the World Health Organization Executive Board meeting taking place in February 2026. 📲 lnkd.in/exF6U8z4

📢 REMINDER: Join RDI on 15 January 2026 from 13:30 - 14:45 CET (updated time) for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the WHO EB meeting taking place in February. 📲 Registration Link: lnkd.in/exF6U8z4

Save the Date! 🌍    🇰🇪 RDI is thrilled to announce that the 2026 RDI Membership Meeting will take place in Nairobi, Kenya from 30 June to 2 July, 2026.    💡 Travel fellowships available! Applications close 1 March 2026. 👉 Check your inbox, register now and secure your spot.

Join us at the 5th MENA Congress for Rare Diseases 2026! 🌍   This is your chance to connect with global leaders, share insights, and drive meaningful change for people living with rare diseases.   👉 Learn more and register here: www.menarare.com

Join RDI on 15 January from 14 - 15 CET for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the WHO Executive Board meeting taking place in February 2026. 📲 Registration Link: lnkd.in/exF6U8z4

Thank you so much! 😊 I cannot wait to share a stage with five other young brilliant souls and their projects. Thank you @nordrare.bsky.social @eurordis.bsky.social @rarediseasesint.bsky.social for elevating youth voices in this way ❤️

Rare Disease Day Official@rarediseaseday.bsky.social · 8mo ago

Meet our 6 Regional Reps for Raising Youth Voices 2026! These young leaders are joining us in Barcelona to help shape the future of the rare disease community! Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026 Pablo Ramirez Uribe

In-person registrations are now open for #RaisingYouthVoiceS2026 in Barcelona! 🎉 Join our Regional Representatives and other young leaders! 👉Register now: go.rarediseaseday.org/voices 🌍 Will also be livestreamed on YouTube. @nordrare.bsky.social @rarediseasesint.bsky.social

🌍 100 Days to Rare Disease Day 2026! The countdown has started! 💡 Join us in making this year bigger, stronger, and more impactful than ever! #RareDiseaseDay #RDI #RDD2026 #RareDiseases #RareDiseaseCommunity

The ASEAN Policy Forum on Rare Diseases, hosted by the Ministry of Health Malaysia and APARDO in collaboration with RDI brought together ASEAN MoH, clinicians, researchers and patient organisations to explore how to turn the #WHAResolution on Rare Diseases into concrete regional and national action

🚀 Not long to go for the 2nd International Conference on Clinical Research Networks: Connected for impact! 🚀 🚨 Don’t miss out — limited in-person spots available!  ✍️ Register now: loom.ly/yceyPYw

Community Conversations on Mental Health 🧠 📅 Date: Friday, 10 October | 3-4pm CEST 📍 Format: Teams Webinar 📲 Register here: events.teams.microsoft.com/event/e74515... #RareDiseases #RDI #MentalHealth #GlobalHealth #PatientAdvocacy #Community

🌏 Regional Webinar | From the WHA Resolution to Action: Next Steps for Asia Pacific 🗓 9 October 2025 🕔 9:00 CEST (UTC+2) India: 12:30 PM | China, Philippines, Singapore: 3 PM | Australia (Melbourne/Sydney): 6 PM | New Zealand: 8 PM ✏️ Register here: events.teams.microsoft.com/event/7b6449...

Community Conversations on Mental Health 🧠 📅 Date: Friday, 10 October | 3-4pm CEST 📍 Format: Teams Webinar 👥 Audience: Open to the public 📲 Register here: events.teams.microsoft.com/event/e74515...

📣 Save the Date | Webinar on Health Financing & Social Protection for Rare Diseases How can countries strengthen health financing and social health protection to better serve PLWRD? 🗓 5 November 🕒 14:00–16:00 CET 💻 Online 👉 Register here: events.teams.microsoft.com/event/36bd06...

Learn how you can be involved in transforming the WHA Resolution on Rare Diseases into concrete action for our communities in Asia Pacific. 🗓 9 October 2025 🕔 9:00 CEST (UTC+2) ✏️ Register here: events.teams.microsoft.com/event/7b6449...

🌎 Regional Webinar | From the WHA Resolution to Action: Next Steps for Latin America & the Caribbean 🗓️ 25 September 2025 🕔 17:00 CEST (UTC+2) 🌐 The webinar will be held in English, Spanish & Portuguese. 👉 Register: us02web.zoom.us/webinar/regi...

Attention RDI Members! We need your help to shape RDI's future. It's simple: ✏️ Fill out our 10-minute survey for members: lnkd.in/gRFgGHxD 💬 Participate in our webinar on 2 October: lnkd.in/gEtGb8vX Your voice matters!

📣 RDI is proud to support its members by offering fellowships to attend the EURORDIS-Rare Diseases Europe Open Academy in Barcelona in 2026. 📍 Barcelona, Spain 🗓️ 25–28 May, 2026 👉🏻 Apply here: loom.ly/oK6lwVI

🌎 Regional Webinar | From the WHA Resolution to Action: Next Steps for Latin America & the Caribbean 🗓️ 25 September 2025 🕔 17:00 CEST (UTC+2) Check your email!

🌏 Malaysia takes a historic step forward with the adoption of its National Rare Diseases Plan — a milestone for people living with rare diseases and their families. 👏 Congratulations to Malaysia. 🇲🇾 National Policy for Rare Diseases in Malaysia: lnkd.in/gZFMe-dn

2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases. 🗓️ Date: 9–10 December 2025 👤📲 Format: Hybrid – online and in-person participation available 👉 Registration: forms.office.com/pages/respon... ℹ️ Further information: erdera.org/news/shaping...