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Rare Diseases International (RDI) @rarediseasesint.bsky.social · 3d

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 · 4d

🌏 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 · 7d

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 · 9d

📣 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 · 11d

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 · 22d

🌎 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...

Rare Diseases International (RDI) @rarediseasesint.bsky.social · 24d

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!

Rare Diseases International (RDI) @rarediseasesint.bsky.social · 29d

📣 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 · Sep 4

🌎 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!

Rare Diseases International (RDI) @rarediseasesint.bsky.social · Sep 3

🌏 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 · Sep 2

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 · Aug 14

🌐 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 · Aug 12

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 · Jul 28

📣 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...

Rare Diseases International (RDI) @rarediseasesint.bsky.social · Jul 15

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.

Rare Diseases International (RDI) @rarediseasesint.bsky.social · Jul 8

🧴🌍 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 · Jul 7

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 · Jul 1

🧬 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 · Jun 24

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

Rare Diseases International (RDI) @rarediseasesint.bsky.social · Jun 18

📣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.

Rare Diseases International (RDI) @rarediseasesint.bsky.social · Jun 18

📣 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 · Jun 17

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 · Jun 10

🎙️ 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 · Jun 6

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...

Rare Diseases International (RDI) @rarediseasesint.bsky.social · Jun 5

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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