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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 19/03/2026

📣 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 18/03/2026

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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 09/03/2026

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 18/02/2026

📣 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 27/01/2026

📢 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 26/01/2026

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 23/01/2026

🌍 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!

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 20/01/2026

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 14/01/2026

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 13/01/2026

📢 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 07/01/2026

📢 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 05/01/2026

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.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 17/12/2025

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 11/12/2025

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

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Reposted by Rare Diseases International (RDI)

Pablo Ramirez Uribe @pabloramirezuribe.com · 08/12/2025

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 ❤️

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Reposted by Rare Diseases International (RDI)

Rare Disease Day Official @rarediseaseday.bsky.social · 11/12/2025

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 20/11/2025

🌍 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 11/11/2025

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 06/11/2025

🚀 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 07/10/2025

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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 06/10/2025

🌏 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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 03/10/2025

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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 01/10/2025

📣 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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 29/09/2025

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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 18/09/2025

🌎 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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 16/09/2025

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!

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 11/09/2025

📣 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 04/09/2025

🌎 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!

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 03/09/2025

🌏 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

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 02/09/2025

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...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 14/08/2025

🌐 From now on, the Coalition formed to support the WHA Resolution will be called the Coalition for Rare Diseases Equity (CARE). 📩 To our Coalition and RDI members, please check your inbox. #RareDiseases #CARECoalition #RDI #GlobalHealth #WHA78 #Webinar #Survey

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 12/08/2025

Today is #InternationalYouthDay 🗣️ At RDI, through our first Youth Leadership Programme, we’re building a global cohort of young advocates from diverse regions and backgrounds, ready to raise their voices and help shape the future of rare disease policy and solutions. 📲 lnkd.in/dGfVNJJp

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 28/07/2025

📣 Save the Date! Join us on 28 August from 14:00 to 15:30 CEST for the next WHA Coalition Webinar on Next Steps. 👉 Open to RDI Members and WHA Coalition members only. 📲 Register here: events.teams.microsoft.com/event/b77dac...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 15/07/2025

At RDI, we are grateful to the Wilhelm Foundation for this invitation to attend the Family Camp, and to every family who shared their voice. These insights will continue to shape our advocacy for a more inclusive and supportive world for all those living with rare and undiagnosed conditions.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 08/07/2025

🧴🌍 July 8 is World Skin Health Day — a day to recognize that our skin is not just our outer layer. It’s about living without pain, being seen without judgment, and accessing the care and support everyone deserves. #WorldSkinHealthDay #WSHD2025 #SkinHealthForAll #RareSkinConditions #RareDiseases

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 07/07/2025

Nominations Now Open to all RDI members for Mapping Rare & the 2025 Aurora Awards! 🌟 Is your organization working on an innovative, inclusive, or impactful initiative for the rare disease community? 📅 Deadline: Friday, 18 July 📩 Submit your nomination now: lnkd.in/dPrJQN6j

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 01/07/2025

🧬 Explore this topic, including an article in Frontiers in Science. 📚 Read it here: lnkd.in/dJMYHfDq 📢 Join the conversation on 9 July | 16:00–17:30 CEST at the next NANOSPRESSO webinar. 🔗 Register here: lnkd.in/dX3hcdzr

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 24/06/2025

Learn more about the importance of #NewbornScreening for rare conditions in an article by RDI Council Chair Kirsten Johnson in today’s Guardian or online - bit.ly/45qk1br #PatientEmpowerment2025 #ChildrensHealth2025

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 18/06/2025

📣The results of RDI's Council Election are in! 🌏 We are pleased to announce that the three officers of RDI's Council of Directors -- a leadership team committed to advancing equity, visibility, and inclusion for people living with a rare disease across the globe -- have been re-elected.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 18/06/2025

📣 Is your organization planning an event in 2026? We’re interested! 📝 Fill out the Expression of Interest Form here: forms.office.com/Pages/Respon... 🗓️ Deadline: Tuesday 15 July

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 17/06/2025

We are delighted to announce the appointment of new members to the RDI Council, the governing body that shapes our strategic direction and strengthens our commitment to PLWRD around the world. Antoine Daher, Casa Hunter Parvathy Raman, Krishnan Family Foundation Diego Gil, ERCAL

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 10/06/2025

🎙️ Your voice matters - We want to hear from you! 🌍💬 Join us in our RDI Membership Meeting, titled Shaping the Future Together: A Decade of Impact and a Shared Vision Ahead. 🗓️ 17 June 2025 🕒 14:45 – 16:00 CEST 🌍 Online | 🎧 With Spanish interpretation 📲 Register here: lnkd.in/d2S4FWRM

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 06/06/2025

Our WHA Side Event, held on 21 May in Geneva during #WHA78, was a landmark moment for the rare diseases community. This was more than an event — it was the expression of a global grassroots movement becoming a true force for health equity. 📲 Read the report: www.linkedin.com/posts/rare-d...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 05/06/2025

RDI is proud to support our members to attend the EURORDIS-Rare Diseases Europe ERDERA #OpenAcademy2025! 🎓 through our Strategic Engagement Fellowship Programme. RDI members are spending the week at this year’s in-person training sessions with the EURORDIS Open Academy in Barcelona.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 26/05/2025

On behalf of Rare Diseases International, we would like to extend our heartfelt thanks to the Arab Republic of Egypt and Prof. Dr. Khaled Abdel Ghaffar, Minister of Health and Population, for co-sponsoring the historic Resolution on Rare Diseases adopted at the 78th World Health Assembly.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 24/05/2025

Today, the first ever RDI WHA statement was delivered by Alanna Miller, Global Policy Coordinator at #WHA78. The individual NSA statement delivered by RDI gives voice to the 275 civil society organizations that have joined the Coalition in support of #Resolution4Rare.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 24/05/2025

🎉 BREAKING NEWS FROM GENEVA! 🎉 The Resolution on Rare Diseases has officially been adopted at the 78th World Health Assembly (WHA78)! 🌍✅ #WHA78 #RareDiseases #HealthForAll #Equity #UHC #Resolution4Rare

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 19/05/2025

Why support the #Resolution4Rare? Because 58% of people with rare conditions face discrimination - in schools, workplaces and even healthcare settings. The WHA Resolution is a step toward inclusion & change. #MentalHealthAwareness #FaceEqualityWeek www.rarediseasesinternational.org/wha-resoluti...

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 19/05/2025

As #WHA78 kicks off, we recognize the power and commitment of the global rare disease community, which has been working tirelessly to make the #Resolution4Rare a reality. The Resolution is a powerful step forward — a shared commitment to equity and to ensuring that no one is left behind.

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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 16/05/2025

🗓️ Save the date for our #WHA78 RDI Side Event in Geneva! 🗓️ 21 May 🕕 18:00 - 21:00h (CEST) |📍La Pastorale (Geneva) & Online 👉 Register to join in person: lnkd.in/d5tPADis 📲 Register to join online: lnkd.in/d_B8Cmtf #Geneva #RareDiseases #UHC #SideEvent #Online

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