RAREvolution

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

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...

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...

It's time to register for the international drug repurposing conference, #iDR25, where medicines are reimagined to unlock the potential of existing drugs for patient benefit!

@eatris.bsky.social @remedi4all.bsky.social
#REMEDi4ALL

remedi4all.org/2025-interna...

@bag.admin.ch
#ElisabethBaume-Schneid

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

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

#RAREvolutionaries:
Jim Bonham
Steven Laurie
Vicente Yepez
Lisenka Vissers
Chris Hendriksz

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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

This technique involves spraying water randomly while mixing colors in the offset printing of the brochure's cover, making each sample unique.
The likelihood of producing two identical covers through this process is significantly lower than the probability of a new orphan disease emerging.

Years ago, when we wanted to present the BLACKSWAN Foundation with a brochure, our designer came up with a brilliant idea to represent research on #rarediseases without depicting individuals living with those conditions. He utilized an innovative process called WROP, or Water Random Offset Printing.

📢 Breaking News! The Executive Board recommends the WHA Resolution on Rare Diseases for adoption at the 78th WHA in May 2025! 📢 🌟The EB’s landmark decision represents the first critical milestone toward our ultimate goal: securing the adoption of the WHA Resolution on Rare Diseases at the #WHA78

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

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

Program:
➡️ Diagnosing RDs – from NBS to machine learning
➡️ Empowering data
➡️ ATMPs – challenges and opportunities
➡️ Impacts of #rarediseases on patients, families, and society
➡️ Funding models
➡️ Drug repurposing in rare diseases
➡️ Plenary talks and a poster exhibition showcasing innovative research

🚨 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.

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