Rare Diseases International (RDI)

📣 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...

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 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

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

🧬 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

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

📣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.

📣 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

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

🎙️ 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

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...

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.

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.

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.

🎉 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

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...

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.

🗓️ 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

Without a diagnosis, it's impossible to access treatment and support. It takes 6 yrs on average to diagnose a rare condition - some never receive a diagnosis at all. We support the WHA #Resolution4Rare to make diagnosis a global health priority. What about you?

lnkd.in/dPkjSDJk

✈️ #WHA78 officially kicks off on Monday 19 May! 

🎯 Don’t miss these key #RareDisease side events.

💬 RDI will be in Geneva all week long and we look forward to connecting with many of you!
 
#WHA78 #Geneva #RareDiseases #SideEvent #UHC

Why support the #Resolution4Rare? Because millions of PLWRD still have no treatment options.

By recognizing rare diseases as a global health priority, it will drive more investment in research, accelerate drug development, and improve access to care.

On April 30, the RDI team visited AFM-Téléthon’s headquarters in Évry, France. Both teams shared a comprehensive overview on their work and common goals, followed by a tour of Genethon’s gene therapy research. RDI team is sincerely grateful for their time and willingness to share their expertise.

Egypt 🇪🇬 and Spain 🇪🇸 will host a side event on the #Resolution4Rare during the World Health Assembly #WHA78 on 19 May in Geneva!

RDI will be participating! See the full agenda here: lnkd.in/drb_MvkD

Attendance is by invitation only - request your spot: www.rareresolutionwha.com/confirm-your...

Rare diseases may be uncommon, but they have a profound impact. Despite medical advances, one third of children born with a rare disease today do not survive to see their fifth birthday. Early diagnosis and access to treatment can change that. That’s why we support the #Resolution4Rare.

Exciting news!! 📢 RDI is proud to host a Youth Leadership Side Event in Geneva.

🗓️ 22nd May from 11 to 12:30h (CEST) at Varembé Conference Centre

🔗 Register now: www.eventbrite.fr/e/voices-for...

#UHC #RareDiseases #YouthLeadership #Geneva

On the occasion of Global Undiagnosed Day 2025, RDI is thrilled to announce a new partnership with Wilhelm Foundation and Rare Care Centre to advance diagnosis and care for people living with rare and undiagnosed diseases. Read more: www.rarediseasesinternational.org/wp-content/u...

Because 60% of people seeking a diagnosis for a rare condition remain undiagnosed, even after comprehensive investigations. We support #Resolution4Rare for the millions of PLWRD and PLWUD around the world.

#UndiagnosedDay2025 @wilhelmfoundation.bsky.social Undiagnosed Diseases Network Foundation

Why support the #Resolution4Rare? Because 5% of the world’s population will be diagnosed with a rare condition during their lifetime, and yet rare diseases are often overlooked in health policies.

It’s time to change that: support #Resolution4Rare.

#UHC #Health4All #WHA #RareDiseases

Because I know someone living with a rare disease (and so do you) I support the #Resolution4Rare. Image of people of different sizes and abilities holding hands.

Why support the #Resolution4Rare? Because rare diseases impact us all—family, friends, neighbors. Yet 300M+ people worldwide lack proper diagnosis, treatment & support.

It's time for equity & action.

Join us—urge leaders to commit to real change!
www.rarediseasesinternational.org/wha-resoluti...

For the 300 million people around the world living with a rare disease, I support the #Resolution4 Rare. Text is dark purple, pink and blue. Image of a globe in the center. Background shows a gear in pink, blue and green on a dark purple background.

Why support #Resolution4Rare? Because rare diseases aren’t rare — 7,000+ conditions affect 300M people worldwide. PLWRD face unique challenges in diagnosis, treatment & care. Let’s make rare diseases a global health priority! #WHA #RareDisease #UHC #HealthForAll