#rarediseases are not always visible, so #colourUp4RARE ! More #research is needed to develop new diagnostic and treatment options and to ensure reliable care. The BLACKSWAN Foundation, with #ProRaris, was in Bern to show our colours. #RAREvolution #RareDiseaseDay #ShareYourColours

Desperate to save their children, parents become unexpected drug developers As the pharma industry turns away, parents of children with ultra-rare diseases step in to advance drug development.

Most #raredisease research is initiated and supported by patients, which drives innovation for common diseases as well. #RAREvolution @swissinfo.bsky.social

It's time for #RAREvolution and Patients and Public Involvement #PPI

Rare diseases legislation Rare diseases present a major challenge to those affected and to the Swiss health system. On 12 September 2025 the Federal Council put a new federal act out for consultation, which is intended to improve the conditions for the implementation of measures to tackle rare diseases.

FINALLY #Switzerland is actively taking steps to address #rarediseases. The #FederalCouncil is tasked with improving conditions for tackling rare diseases and establishing a foundation for the sustainable funding of efforts to collect, process, and share health information. #RAREvolution #ProRaris

We're excited to share that the Chairman of the BLACKSWAN Foundation, Dr. @oliviermenzel.bsky.social will be attending the World Orphan Drug Congress Europe from October 27 to 29, 2025!

#RAREvolution #WODC #WorldOrphanDrugCongress

World Health Assembly Resolution on Rare Diseases - Rare Diseases International Universal Health Coverage for Rare Diseases (#UHC4RareDiseases) Campaign Toolkit

📢 Call to Action – It's time for the #RAREvolution!
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).

#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC

#RAREvolution at the RE(ACT), #RareDisease #Research Congress
#REACTCongress2025

“The EU supports collaboration because no country alone, and no stakeholder alone, has the answer for such huge unmet needs in #raredisease research”
#RAREvolution

#RAREvolution It was great to collaborate with @erdera.bsky.social in organizing a unique Rare Disease Research Congress with many stakeholders.

🔬 This is the end of the RE(ACT) Congress & IRDiRC Conference 2025

The third day also gave us many fantastic discussions; we explored funding models and #Drugrepurposing in #rarediseases.
#RAREvolution #IRDiRC
@erdera.bsky.social

🔬 End of day 2 at the RE(ACT) Congress & IRDiRC Conference 2025

Fabulous discussions Today on exploring advanced therapy medicinal products (ATMPs) and understanding the far-reaching impacts of #rarediseases on society.

#RAREvolution #IRDiRC @erdera.bsky.social

#RAREvolution time 🦓 Stand up for scientific #research on #rarediseases

#RAREvolution

End of day one, after an inspiring session on “Empowering #data” with great speakers
* Nicole Vasilevsky, US 
* Sabine Österle, CH 
* Thomas Hellebrand, BE 
* Marieke Bak, NL 

#RAREvolution
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases

@

Illuminating session this morning on “Diagnosing #rarediseases: from NBS to machine learning” with outstanding speakers
#collaborationiskey
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #OrphanDiseases
@vyepez.bsky.social

This is a start! 🤘🏼

#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases

D-day #RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases

Tomorrow will start the 8th edition of the RE(ACT) Congress! We are ready, and you? It’s time for #RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases

Happy #RareDiseaseDay
#RAREvolution

#RAREvolution

Now, Demian Conrad is showcasing years of WROP variations at the Kunsthaus Bienne / Centre d'art de Bienne.
Our brochure is also there!
#RAREvolution

👉 Register today and check out the complete program: loom.ly/npx4DUQ

#RAREvolution #REACTCongress2025 #RareDiseases #OrphanDiseases
@erdera.bsky.social #IRDiRC

🚨 Final Call for Registration!

The RE(ACT) Congress is near! Don’t miss your chance— registration will close at the end of the month.

🔬 This is a vital event for the rare disease research community, offering opportunities to connect, collaborate, and participate in the #RAREvolution.

⏳ Final Call for Registration!
The RE(ACT) Congress & IRDiRC Conference 2025 is fast approaching! Regular registration and abstract submissions close at the end of this month. 👉 Register now at loom.ly/FOgBwLw and be part of the #RAREvolution! #RareDiseases

#RAREvolution! Resolution calling for a Global Action Plan on #RareDiseases

🌟 Only 9 days remain to register for the RE(ACT) Congress & IRDiRC Conference 2025, the one-of-a-kind international Congress on #RareDiseases research.

✨ Join the #RAREvolution
#REACTCongress2025 #RareDiseases #OrphanDiseases
#IRDiRC #ERDERA @erdera.bsky.social

📅 Register here: loom.ly/FOgBwLw

🌟 Why Attend the RE(ACT) Congress & IRDiRC Conference 2025?
🌍 Shape the future of rare disease research with cutting-edge talks, networking, and a patient-centred focus.
✨ Join the #Rarevolution!
📅 Register by month-end: loom.ly/E9DWIro
@rarevolution.bsky.social

🚀 Join ERDERA’s First Landmark Event! 🌟
Connect with global experts, explore groundbreaking research, and champion a collaborative, patient-centred approach to #RareDiseases🧬
Register now for the RE(ACT) Congress & IRDiRC Conference 👉 loom.ly/npx4DUQ
#RAREvolution

We are pleased to announce that the RE(ACT) Congress and IRDiRC Conference 2025 have extended the regular registration and abstract submission deadline until the end of January!🎉

👉 Register: loom.ly/FOgBwLw

#RAREvolution #RareDiseases #OrphanDiseases #IRDiRC #ERDERA
@rarediseasesint.bsky.social