🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Next week, we will be kicking off #OpenAcademy2025, a key pillar of our mission to involve our community in rare disease research through ERDERA! 💥 Want to know more? Watch the full interview with Roseline Favresse. 📺 go.eurordis.org/10MW

📣 Calling all EURORDIS member organisations! Help safeguard patient voting rights by signing on to our joint statement with European Patients' Forum. 🙋 go.eurordis.org/nLKMeX Please email our Communications Manager, Julien Poulain, with your organisation’s full legal name and logo.

A timely diagnosis can change lives. Ayça Şahin’s story shows how - shaping her care, identity, and access to support! But too many in our community still face years of delays. 🎧 Hear her story in #EURORDISRareOnAir episode 34! 👉 go.eurordis.org/e2aN0D

For many across the rare disease community, being misunderstood can be as painful as the condition itself. Alessandra Tolaccia shares how living with OI taught her the power of speaking out & why she refuses to stay silent. 👉Read her story: go.eurordis.org/qwRZpZ

⭐ New IRDiRC Publication: "From roadmap to a sustainable end-to-end individualized therapy pathway" ⭐ 🌍 Let’s make individualized therapies a standard, not an exception. 🔗 Read more: journals.sagepub.com/doi/10.1177/26… #RareDisease #Nof1 #PrecisionMedicine #IRDiRC

Later this week, our CEO VirginieBrosF will join Friends of Europe's #SustainableLivelihoodsSummit to discuss how we can build resilient, inclusive and future-ready health systems in Europe, amid unprecedented challenges. ➡️ Tune in on 5 June: tinyurl.com/SusLivSummit25

⏰ This week | Join top-level leaders at Session II of our #SustainableLivelihoodsSummit as we explore the potential offered by #AI and #DigitalHealth to cure Europe's health systems. 👉 Learn more: tinyurl.com/SusLivSummit25 Novartis Ricardo B. Leite Tomislav Sokol EURORDIS-Rare Diseases Europe

Welcome to the #OpenAcademy2025! 🎓 We are thrilled today to open this year’s in-person training sessions in Barcelona. Participants will gain essential knowledge and skills to become powerful voices in research, policy, and healthcare! ⬇️ ERDERA

Today, #OpenAcademy2025 participants visited Hospital Sant Joan de Déu Barcelona ES & CNAG to see research in action! 🧬 They then continued this theme by exploring case studies through interactive sessions. Huge thanks to our hosts for sharing their time and expertise! ➡️ openacademy.eurordis.org

🙌Yesterday we had the pleasure of welcoming the participants of the EURORDIS-Rare Diseases Europe #OpenAcademy2025 🧬They explored our main projects, our Sequencing Unit and Data Center — where science and technology come together to advance rare disease research See you next year! #RareDiseases

🔬Esta semana hemos recibido en Hospital Sant Joan de Déu Barcelona ES a los participantes de la Open Academy de EURORDIS-Rare Diseases Europe. Conocieron el proyecto #ÚNICAS y nuestro compromiso con las enfermedades raras a través de la investigación impulsada por Institut de Recerca Sant Joan de Déu. ¡Gracias por vuestra labor inspiradora!

Answering ethical questions in the genome editing debate and unpacking the reality of working with @‌EMA_News - that’s what today’s agenda held for #OpenAcademy2025! 🧠 Today’s sessions marked a deep dive into each School’s area of focus. ➡️Learn more openacademy.eurordis.org

⚕️ In her final remarks, Virginie Bros-Facer, CEO of EURORDIS-Rare Diseases Europe shares her message to the EU leadership: “My message to the EU is to embed #health across EU policy frameworks - competitiveness, digital transformation and security.” #SustainableLivelihoodsSummit

Speaking at @friendsofeurope's #SustainableLivelihoodsSummit, VirginieBrosF spoke about the transformative potential of the European Health Data Space (EHDS) to build resilient, equitable, and patient-centred health systems across Europe. 🔴 Watch now: tinyurl.com/SusLivSummit25

Signing off from #OpenAcademy2025! 👋 After an incredible few days of learning and sharing, our 2025 Schools have come to a close! Keep an eye out in September for some exciting new things! #OpenAcademy2026 In the meantime, start your journey today ⬇️ openacademy.eurordis.org

We round out our week of patient empowerment with the REMEDi4ALL Repurposing Bootcamp in Barcelona! 🎓 We were proud to lead this training as part of the REMEDi4ALL Academy and would like to thank all the participants for being so engaged & insightful! 👉 academy.remedi4all.org

Behind every breakthrough, there are volunteers making it happen.✊ At the #EURORDISAwards2025, Dr Pauline Evers was recognised for her decade of dedicated volunteer work, including on EU Medicines Agency COMP. Do you know an inspiring volunteer? Nominate them! ✨ go.eurordis.org/Nominate

Over 70 patient organisations have joined EURORDIS and European Patients' Forum in calling on EU policymakers to safeguard voting rights for patient representatives in the EU Medicines Agency committees. ➡️This is not symbolic. We are at risk of losing vital patient input. go.eurordis.org/m4L7Kv

The coming weeks are critical for the future of patient involvement in EU medicines regulation. Join our campaign with European Patients' Forum advocating for strong patient representation in EU healthcare decisions now! 🙋 👉 Use the toolkit: go.eurordis.org/UqedwF

Two weeks ago, our 77 #OpenAcademy2025 participants were arriving in Barcelona for their intensive, in-person training week! 🏥 Exclusive visits to pioneering medical spaces 🤯 New topics, powerful stories 🫂 Forming connections that last 👉 Read more: go.eurordis.org/inl73k