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Rare Diseases International (RDI)
@rarediseasesint.bsky.social
340 followers 78 following 82 posts
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
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rarediseasesint.bsky.social
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.
January 5, 2026 at 11:25 AM
rarediseasesint.bsky.social
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
December 17, 2025 at 9:14 AM
rarediseasesint.bsky.social
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
December 11, 2025 at 3:05 PM
Reposted by Rare Diseases International (RDI)
pabloramirezuribe.com
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 ❤️
rarediseaseday.bsky.social Rare Disease Day Official @rarediseaseday.bsky.social · Dec 5
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
Meet our 2026 Raising Youth Voices Regional Representatives, above an arrow and RDI, Rare Disease Day and NORD logos. Stephanie, Yu Su, Maksym, Vincent, Pablo and Liam in colourful circles, smiling. 'Event Registrations Coming Soon...' Ipsen Foundation Logo, 'Realised with the support of Fondation Ipsen, under the aegis of Fondation de France'.
December 8, 2025 at 5:37 PM
Reposted by Rare Diseases International (RDI)
rarediseaseday.bsky.social
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
December 11, 2025 at 1:18 PM
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
November 20, 2025 at 9:46 AM
rarediseasesint.bsky.social
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
November 11, 2025 at 11:33 AM
rarediseasesint.bsky.social
🚀 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
November 6, 2025 at 9:25 AM
rarediseasesint.bsky.social
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
October 7, 2025 at 12:09 PM
rarediseasesint.bsky.social
🌏 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...
October 6, 2025 at 10:46 AM
rarediseasesint.bsky.social
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...
October 3, 2025 at 10:28 AM
rarediseasesint.bsky.social
📣 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...
October 1, 2025 at 9:11 AM
rarediseasesint.bsky.social
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...
September 29, 2025 at 2:47 PM
rarediseasesint.bsky.social
🌎 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...
September 18, 2025 at 12:03 PM
rarediseasesint.bsky.social
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!
September 16, 2025 at 7:36 AM
rarediseasesint.bsky.social
📣 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
September 11, 2025 at 8:41 AM
rarediseasesint.bsky.social
🌎 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!
September 4, 2025 at 1:31 PM
rarediseasesint.bsky.social
🌏 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
September 3, 2025 at 8:22 AM
rarediseasesint.bsky.social
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...
September 2, 2025 at 12:13 PM
rarediseasesint.bsky.social
🌐 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
August 14, 2025 at 12:03 PM
rarediseasesint.bsky.social
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
August 12, 2025 at 12:45 PM
rarediseasesint.bsky.social
📣 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...
July 28, 2025 at 11:23 AM
rarediseasesint.bsky.social
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.
July 15, 2025 at 12:04 PM
rarediseasesint.bsky.social
🧴🌍 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
July 8, 2025 at 7:07 AM
rarediseasesint.bsky.social
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
July 7, 2025 at 10:01 AM