Join us in Dublin to discuss the future of rare disease research & innovation, including the EU Action Plan for Rare Diseases, the Biotech Act & meaningful patient partnership.

📅 13 Nov
👉 Register: https://go.eurordis.org/rare-diseases-event

💊 Heading to Barcelona for the #OpenAcademy x ERDERA Schools?

Extend your learning with the #REMEDi4ALL Repurposing Bootcamp and explore how patient representatives can help move promising ideas forward.

📍 Barcelona | 10–11 June
⏰ Apply by 16 Oct: https://go.eurordis.org/Remedi4allTraining

🧠 7 in 10 people living with rare diseases & their families report poor mental health.

This #WorldMentalHealthDay, we call for mental health to be integrated into rare disease care. 👉 https://go.eurordis.org/RareBarometerResults

🤝 Today in Barcelona, our 42nd #ERTC workshop explored how mental health, quality of life & patient experience can shape rare disease research.

Discussions covered clinical trial burdens, psychological support & invisible symptoms. 👉 https://go.eurordis.org/RareBarometerResults

Last June, 800+ people from 55 countries came together at #ECRD2026 to shape the future of rare disease policy in Europe.

Our newly published Executive Summary captures the priorities & calls for action that emerged. 👉 Read it now: https://go.eurordis.org/ECRDExecutiveSummary

💬 What could 6 months with the right mentor unlock for your advocacy?

Get 1:1 support tailored to your goals, challenges & ambitions through the Open Academy x ERDERA Mentoring Programme.

💻 1 hour/month, online
⏰ Apply by 10 Oct: https://go.eurordis.org/MentoringProgramme

⏳ 10 days left to apply!

This June, patient advocates & early-career researchers will come together in Barcelona for the #OpenAcademy x ERDERA Schools 2027.

📍 7–10 June
⏰ Apply by 30 Oct: https://go.eurordis.org/OAERDERASchool

🚀 Want to take a bigger role in advocacy?

There’s still time to join tomorrow’s #KickstartYourAdvocacy webinar and explore how to step into leadership, bring others with you & turn ideas into action.

👥 Under 30 |💻 Free & online
👉 https://go.eurordis.org/advocacy-webinar

🎙️ A new #ERNsOnAir episode has just landed!

Ruth Biller & Lia Crotti join host Nora Lázaro to explore how patients and clinicians co-created a resource to support families following sudden cardiac death. 🎧 Tune in: https://go.eurordis.org/ERNsPodcastEp

🇪🇺 Crossing a border shouldn’t become another barrier to care.

On 4 Nov, MEPs, healthcare professionals & patient representatives will discuss how EU cross-border healthcare can better meet the needs of people living with rare diseases & cancers.

👉 https://go.eurordis.org/expert-dialogue

💊 What role can patient organisations play in drug repurposing?

Join the REMEDi4ALL Repurposing Bootcamp to explore real-world cases, tackle common challenges & learn how you can help move promising ideas towards patients.

📍 Barcelona, 10–11 June 👉 https://go.eurordis.org/Remedi4allTraining

🎓 Sometimes the best takeaway isn’t an answer, but a better question.

That’s what participant Jessica Head took from our #EURORDISOpenAcademy Data, Ethics & AI training. 👉 https://go.eurordis.org/rSG4SE

Don’t miss your chance to join the Open Academy x ERDERA Schools 2027!

📢 Registration is open!

Join us in Dublin on 13 Nov to explore how we can turn rare disease research & innovation into better outcomes, with the rare disease community at the heart of progress.

📍 Dublin
👉 https://go.eurordis.org/rare-diseases-event

“I’m part of the conversation… but what’s my next step?” 🤔

Our next #KickstartYourAdvocacy webinar is about moving from participant to leader and turning your ideas into action.

📅 7 Oct | Online & FREE
👥 Under 30
👉https://go.eurordis.org/advocacy-webinar

🎬 Our latest #10MinutesWith is now on YouTube!

Taylor Kane joined Rhiannon Walls to talk about young people’s role in #RareDisease advocacy and turning lived experience into action.

Her advice to young advocates? “Just start.”

▶️ Watch: https://go.eurordis.org/latestEp10MW

Rare disease research is stronger when scientific expertise and lived experience come together.

The Open Academy x ERDERA Schools bring patient advocates together to learn, exchange and connect.

📍 Barcelona | 7–10 June 2027
👉 Apply by 16 Oct: https://go.eurordis.org/OAErderaSchools

🧬 How can the #EUBiotechAct boost innovation & improve access for people with cancer and rare diseases?

Join the Expert Dialogue at the European Parliament on research, advanced therapies & equitable access.

📅 12 Oct | 15:45 CEST
👉 https://go.eurordis.org/expert-dialogue-eu-biotech

👶 Where a child is born in Europe can shape their chances of being screened for a rare disease.

In a new Mediaplanet article, EURORDIS’ Gulcin Gumus explores why more equitable newborn screening across the EU matters.

📖 Read: https://go.eurordis.org/MediaPlanetArticle

#RareDiseases #Health

Rare disease research has helped pioneer breakthroughs in medicine. But how can the #EUBiotechAct better support the field?

We look at what still needs to change – from recognising rare diseases as a priority to ensuring innovation reaches patients.

📖 https://go.eurordis.org/eu-biotech-act

💊 This week, the spotlight is on medicines development and what it takes to turn research into something that can reach patients.

Ready to understand that journey & bring the patient voice into it?

Apply to the Open Academy x ERDERA Medicines R&D School 👉 https://go.eurordis.org/OAERDERASchool