Rare Diseases International (RDI)
LightNews LightNews
banner
rarediseasesint.bsky.social
Rare Diseases International (RDI)
@rarediseasesint.bsky.social
330 followers 77 following 78 posts
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
Posts Replies Media Videos
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
rarediseasesint.bsky.social
🧬 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
July 1, 2025 at 11:55 AM
rarediseasesint.bsky.social
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
June 24, 2025 at 8:57 AM
rarediseasesint.bsky.social
📣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.
June 18, 2025 at 12:47 PM
rarediseasesint.bsky.social
📣 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
June 18, 2025 at 7:49 AM
rarediseasesint.bsky.social
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
June 17, 2025 at 12:59 PM
rarediseasesint.bsky.social
🎙️ 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
June 10, 2025 at 11:47 AM