iiinova — where your digital self keeps evolving

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 5h

💬 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: go.eurordis.org/MentoringProgramme

Two men engaged in a mentoring session, writing notes together in a professional setting promoting Eurordis Open Academy. With overlapping text: where could mentoring take you next, apply by 10 october

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 13h

⏳ 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: go.eurordis.org/OAERDERASchool

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 05/10/2026

🚀 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 👉 go.eurordis.org/advocacy-webinar

Portrait of Zhana Chokheli, Patient Advocate and President of the Georgian Alliance for Rare Diseases, promoting a webinar on advocacy.

Portrait of Lauren Roberts, Chief Executive at Rareminds, promoting a webinar on advocacy titled 'Kickstart Your Advocacy' scheduled for October 6, 2026.

Portrait of Ida Mirković Knaus, young advocate for Rare Diseases Croatia, promoting a webinar on advocacy skills.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 05/10/2026

🎙️ 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: go.eurordis.org/ERNsPodcastEp

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 02/10/2026

🇪🇺 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. 👉 go.eurordis.org/expert-dialogue

European Union flags waving outside the European Parliament building in Brussels on a clear day.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 01/10/2026

💊 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 👉 go.eurordis.org/Remedi4allTraining

Group of professionals engaged in a discussion during the Remedi4All Repurposing Bootcamp for patient representatives.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 30/09/2026

🎓 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. 👉 go.eurordis.org/rSG4SE Don’t miss your chance to join the Open Academy x ERDERA Schools 2027!

001

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 29/09/2026

📢 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 👉 go.eurordis.org/rare-diseases-event

Event registration for Rare Diseases Ireland's 2026 conference on embedding research and innovation in rare disease care in Dublin.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 28/09/2026

“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

Webinar titled 'Kickstart Your Advocacy: Leading Change from Participant to Pioneer' featuring three patient advocates and leaders in rare diseases.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 25/09/2026

🎬 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: go.eurordis.org/latestEp10MW

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 23/09/2026

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: go.eurordis.org/OAErderaSchools

Young woman writing on a flip chart during a research discussion at EURORDIS Open Academy event. With overlapping text: be part of the research conversation.

001

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 22/09/2026

🧬 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 👉 go.eurordis.org/expert-dialogue-eu-…

Expert dialogue on the EU Biotech Act at European Parliament, Brussels, on 12 October at 3:45 PM CEST.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 22/09/2026

👶 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: go.eurordis.org/MediaPlanetArticle #RareDiseases #Health

Doctor using a stethoscope to examine a smiling baby, promoting Mediaplanet's Rare Diseases Campaign launching on 18th September.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 21/09/2026

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. 📖 go.eurordis.org/eu-biotech-act

Close-up of test tubes filled with blue liquid in a lab with scientists working in the background.

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 19/09/2026

💊 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 👉 go.eurordis.org/OAERDERASchool

Group of diverse professionals engaged in a medicines research and development discussion at EURORDIS Open Academy training. With overlapping text: spotlight: medecines research and development school

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 18/09/2026

🩸 Around 70% of rare diseases begin in childhood, yet signs may not appear in the first days or months of life. Newborn screening can help provide answers earlier. 📣 There’s still time to endorse our call for stronger European collaboration by 30 Sept: go.eurordis.org/newborn-screening

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 16/09/2026

📣 Kickstart Your Advocacy starts on 24 September! Join Nicole Faccio & Julien Poulain for a FREE webinar on using storytelling to strengthen your advocacy and make your voice heard. 👥 For young people under 30 👉 Register: go.eurordis.org/advocacy-web... #RareDiseases #YouthAdvocacy

Kickstart your advocacy: finding your voice: communication and storytelling. As speakers: Nicole Faccio: content creator and patient advocate, and Julien Poulain: communication and policy liaison senior manager at EURORDIS. Join us on 24 of September at 4PM CEST

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 15/09/2026

Day 2 of our #EURORDISOpenAcademy x @erdera.bsky.social training explored ethics, informed consent, the #EHDS, AI in clinical practice, and how people living with rare diseases can help shape what comes next. 🤝 @worldduchenne.bsky.social @worldduchenne.bsky.social @unileiden.bsky.social

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 14/09/2026

🤖 How can data & AI work better for people living with rare diseases? Day 1 of our #EURORDISOpenAcademy x #ERDERA training explored trusted data, AI, drug repurposing, patient registries & more. 📸 A few moments from our first day in Barcelona!

A woman speaking into a microphone during a meeting with attendees seated around tables in a modern conference room.

A diverse group of people attentively listening in a modern conference room with wooden walls and large windows.

Woman standing and speaking into a microphone during a meeting in a modern room with wood and black diagonal wall panels.

Adults attentively listening during a seminar in a modern conference room with wood and black diagonal wall panels.

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 11/09/2026

What is #RareDiseaseDay? 💙 More than a day on the calendar, it's a global movement united by one goal: EQUITY. Equity in diagnosis, healthcare, treatment, support and opportunity for the 300+ million people living with a rare disease worldwide. Join the movement: go.eurordis.org/RDD

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 11/09/2026

💊 What if an existing medicine could become a new treatment? The REMEDi4ALL Repurposing Bootcamp helps patient representatives understand drug repurposing – and how patient organisations can play an active role. 📅 10–11 June 2027 👉 Apply: go.eurordis.org/patient-repurposing

Promotional banner for REMEDI4ALL Repurposing Bootcamp on June 10-11, 2027, in Barcelona for patient representatives.

001

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 10/09/2026

⏳ Only 7 days until #10MinutesWith is LIVE! Rhiannon Walls will be joined by Taylor Kane to explore why young voices matter in rare disease advocacy – and how taking one small step can lead to meaningful action. 🔴 17 Sep | 05:00 CEST: go.eurordis.org/LinkedinLive

Two women engaged in a conversation against a purple backdrop with text about a 10-minute youth leadership session featuring Rhiannon Walls and Taylor Kayne

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 10/09/2026

🔬Want to get closer to the science behind rare disease research? Build the knowledge & confidence to take part in research conversations at the Open Academy x ERDERA Scientific Innovation & Translational Research School. 📍 Barcelona | 7–10 June 2027 👉 go.eurordis.org/OASchools

A group of people gathered around a man explaining scientific equipment in a research lab setting. With overlapping text: Spotlight: scientific innovation and translational research school

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 09/09/2026

⏰ Thought you’d missed your chance to nominate? There’s still time! Nominations for the #BlackPearlAwards 2027 are now open until 11 September. If someone’s work for the rare disease community deserves recognition, now is your chance to put them forward. 👉https://go.eurordis.org/BPA2027

Eurordis Black Pearl Awards nomination deadline extended to 11 September with purple background and star figures.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 09/09/2026

🩸 A baby’s postcode shouldn’t determine their chance of an early diagnosis. Yet newborn screening remains unequal across Europe. This #NewbornScreeningAwarenessMonth, we’re calling for stronger EU collaboration. 📣 Add your organisation’s voice by 30 Sept: go.eurordis.org/newborn-screening

Man in a blue plaid shirt holding a baby with text announcing September as Newborn Screening Awareness Month.

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 07/09/2026

🎓 Completed an Open Academy School? Your next step could start here. The Open Academy x ERDERA Mentoring Programme offers 6 months of 1:1 mentoring, exclusively for alumni. 📢 Apply 7 Sep–3 Oct 🤝 30–40 places 👉 go.eurordis.org/mentoring-alumni

EURORDIS Open Academy branding with overlapping text: alumni mentoring programme: apply now: december 2026 - May 2027

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 02/09/2026

🔬 Rare disease research moves forward when knowledge, experience & expertise come together. Through initiatives like #OpenAcademy & #RareBarometer, EURORDIS helps strengthen patient engagement in research. 🔗 Discover our work: go.eurordis.org/rare-research-euror…

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 01/09/2026

🎓 Applications for the 2027 #EURORDISOpenAcademy x ERDERA Schools are open! 💊 Medicines Research & Development 🔬 Scientific Innovation & Translational Research 📍 Barcelona | 7–10 June 2027. Find your School & apply: go.eurordis.org/OpenAcademy2027

Call for applications: open academy x erdera schools 2027

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 31/08/2026

🧬 Interested in the latest clinical trial developments in osteogenesis imperfecta? Join OIFE’s free #ClinicalTrials Update 2026 webinar for an overview of ongoing OI trials. 📅 13 October | 20:00 CET 👉 Register: go.eurordis.org/trial-update-oife

Webinar announcement for Clinical Trial Update 2026 on osteogenesis imperfecta research with date, time, and QR code for registration.

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 26/08/2026

Europe has an opportunity to raise the ambition for #RareDisease research & innovation. 📅 Save the date: 13 November, Dublin, for a rare disease-focused Associated Event of Ireland’s EU Council Presidency. Full programme & registration to follow: go.eurordis.org/eu-presidency-rdi

Save the date for Rare Diseases Ireland event on Nov 13, 2026, at Radisson Blu Royal Hotel, Dublin, focusing on research and innovation in rare diseases.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 24/08/2026

🤝 What does meaningful patient partnership look like? This #EURORDISBlackPearlAward recognises partnerships engaging people living with a rare disease as equal partners in medicines development. 👉 Nominate today: go.eurordis.org/BPA2027

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 21/08/2026

🔗 How can Europe make rare disease health data easier and safer to exchange? A new paper, co-authored by our Digital Patient Engagement Manager, shares outcomes from the #JARDIN Hackathon, where 47 experts explored practical solutions. 📖 Read now: go.eurordis.org/jardinhackathon

Article announcement on overcoming challenges in rare disease health data sharing from the JARDIN Hackathon.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 18/08/2026

💊 For people living with a rare disease, the development of new therapies is only part of the challenge. But they must also be made available, accessible and affordable – wherever someone lives. 🔗 Learn more: go.eurordis.org/eurordis-treatments

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 17/08/2026

🧬 Abstract submission and registration are now open for the 5th OIFE European Investigator Meeting on OI. Researchers in Europe and beyond are invited to share their work, connect with peers and advance OI research. 🔗https://go.eurordis.org/oife2026

Flyer for the OFIE Investigator Meeting on Nov 13, 2026, with registration deadline Nov 10 and abstract submission deadline Sept 20, featuring committee photos and registration info.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 14/08/2026

🎬 Some stories stay with you long after the credits roll. The #EURORDISAwards2027 Media & Awareness Raising Award celebrates projects that change how the world sees rare diseases. Know one? Nominate it today 👉https://go.eurordis.org/BPA2027

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 12/08/2026

💜 This #InternationalYouthDay, we're launching a free webinar series for people under 30 in the rare disease community! Learn communication, leadership, EU advocacy & resilience. Supported by the Stavros Niarchos Foundation through #30for30. Learn more: go.eurordis.org/newwebinarse...

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 11/08/2026

🔬 The EURORDIS Scientific Award honours researchers advancing rare disease science while engaging patients, fostering collaboration and driving scientific breakthroughs. Could that person be in your network? 👉 go.eurordis.org/BPA2027

Professor Hélène Dollfus holding a star-shaped award at the EURORDIS Black Pearl Awards event. with overlapping quote: as a European reference network coordinator, we have to work together across the rare disease ecosystem to provide the best possible care and research for patients.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 10/08/2026

💜 Living with a rare disease doesn't stop when the medical appointment ends. It continues in every part of life. In this #10MinutesWith episode, Victoria Oruwari shares how challenging assumptions and breaking barriers made inclusion possible. ▶️https://go.eurordis.org/10MWAccessibility

030

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 07/08/2026

🩺 A diagnosis can change everything, opening open the door to the right care, treatment, support and community. 🔗 Learn more about rare disease diagnosis and what we do: go.eurordis.org/eurordispriorities

020

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 06/08/2026

How do the challenges of living with a rare bone condition change over the course of a life? Join the OIFE Topical Meeting to explore better, more holistic care for adults with OI and other rare bone conditions. 📅 9–12 Sept 2027, Oslo, Norway 👉https://go.eurordis.org/tropicalmeeting

Modern Oslo waterfront with text announcing the OIFE Topical Meeting on adult life phases with OI, Sept 9-12, 2027, at Quality Expo, Norway.

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 05/08/2026

🏔️ Some mountains are climbed with ropes. Others with resilience. Our latest Member Comment from the European Haemophilia Consortium explores how #ProjectElevateHer is helping make women with bleeding disorders visible. 👉 Read more: go.eurordis.org/elevateher

Mountain backdrop with text promoting Project Elevate Her, raising awareness of bleeding disorders in women.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 04/08/2026

📱 Whose posts never fail to stop your scroll? The #EURORDISAwards2027 Social Media Award celebrates creators using social media to amplify rare disease voices. Nominate someone to join our next 3 finalists - then let the community vote! 👉https://go.eurordis.org/BPA2027

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 31/07/2026

💙 This award celebrates the people who make the rare disease community stronger through their time, passion and commitment. Nominate an inspiring volunteer for the EURORDIS #BlackPearlAwards 2027 now 👉 go.eurordis.org/BPA2027

010

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 30/07/2026

Catch up on our latest #10MinutesWith! 🎙️ Discover how the Rare Patient Passport is helping people living with rare diseases spend less time repeating their medical history and more time receiving coordinated care. 🎥 Watch: go.eurordis.org/newep10MW

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 28/07/2026

🤝 Outstanding care is about more than treatment. The EURORDIS Holistic Care Award celebrates teams providing coordinated, person-centred support for people living with #RareDiseases and their families. Nominate them today 👉 go.eurordis.org/BPA2027

A quote from the Bulgarian Huntington Association: this award has opened new opportunities for partnerships and encouraged us to continue developing integrated services that address the psychological, social, and practical challenges of living with a rare disease.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 27/07/2026

💬 The words we use matter. In our latest Member Comment, Kris Kusidlo explains why building a shared language around childhood dementia can strengthen research, policy and support, not just for childhood dementia, but for all rare diseases. 👉 go.eurordis.org/childdementia

Text highlighting the importance of unified terminology for childhood dementia and rare diseases to build global consensus.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 25/07/2026

🧬 For millions of people living with rare diseases, getting a diagnosis is the first step towards care and support. This #GeneticTestingActionDay, we highlight the role of genetic testing in shortening the rare disease diagnostic odyssey. 🔗 Learn more: go.eurordis.org/testingday

Father and child reading together, with overlapping text about genetic testing for unexplained symptoms.

031

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 24/07/2026

For women living with #SMA, pregnancy is becoming a reality. But this alone isn't enough. Our latest Member Comment from SMAFinland explores why medical progress must be matched by coordinated care and support. 👉 go.eurordis.org/smarpregnancy

Newborn baby peacefully sleeping in the arms of a person wearing a white long-sleeve shirt against a neutral background.

000

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 23/07/2026

Doctors told Romain Alderweireldt his son Aurélien might only live another 5 months. That experience led to GEMS-App, an innovative tool for advancing rare disease research & winner of the #ECRD2026 Poster Pitch Competition. Read their story 👉https://go.eurordis.org/eurorordisnews

Smiling family of three sitting closely on a beige couch, holding hands and looking at the camera in a bright room.

100

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 22/07/2026

🤝 New name, broader vision. Formerly the Company Award for Patient Engagement, the EURORDIS Patient Partnership in Medicines Development celebrates collaborations placing rare disease patients at the heart of medicines development. 👉 go.eurordis.org/BPA2027

Two award recipients on stage at the EURORDIS Awards, celebrating the 2026 Company Award for Patient Engagement with a quote about partnership and research.

000