Next week ERDERA co‑organises Where Diagnosis Becomes Hope for #UndiagnosedDay — a clinician‑led meeting on phenotype‑driven diagnosis and live cases.
📋 Explore the agenda: https://loom.ly/DbXzw0E
👉 Read more: https://loom.ly/kmU2JoY
#RareDiseases #ERDERA

📣 Two online courses are offering direct interaction with specialists in rare disease research.
📅 7 April–15 May: Health Data Ethics & Regulatory Frameworks
📅 27 April–12 June: From Lab to Clinic: Translational Research
🔗 Find out more and register: https://loom.ly/oPGm0FY
#ERDERA

📬 Missed the ERDERA newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here 👉 https://loom.ly/7VjkRXs
📩 Don’t miss the next issue, subscribe now: https://loom.ly/TFRXEBY
#ERDERA #RareDiseases

⏳ 2 weeks to go: Join Undiagnosed Day 2026 in Gdańsk!
🗓️ On 30 April 2026 we will bring together experts and stakeholders to explore approaches to phenotyping and diagnosis in undiagnosed conditions.
🔗 Discover the agenda and strong line-up of speakers, and register now: https://loom.ly/DbXzw0E

Patients are the glue holding the whole system together—without them, it simply wouldn’t exist.
👉 ERDERA speaks with Bojana Mirosavljevic, advocate behind Zoya’s Law in Serbia, on why patient voices must shape research & policy from day one.
🔗 Read more: https://loom.ly/vxcS4lo

💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases?
🔎 Learn more: https://loom.ly/pjOwax0
#ATMPs #AdvancedTherapies #RareDiseases #ERDERA

How is Bulgaria advancing rare disease policy in line with Europe?
ERDERA speaks with Prof. Radka Kaneva and Dr Petia Stratieva of the National Mirror Group. 👉 Read the full interview: https://loom.ly/Cv6fEqU
#RareDiseases #ERDERA

🚀 Want to lead the way in #RareDisease research?
Subscribe to #ERDERA’s newsletter! 📩
✅ Big news first
✅ Expert tips & tools
✅ Breakthroughs that matter
✅ Community highlights
Subscribe at 👉 https://loom.ly/NxMGydc

🔬 How do we improve diagnosis for people with undiagnosed conditions?
📅 30 April | #UndiagnosedDay 2026
🌟 Expert & lived‑experience panellists
👉 View the agenda and register: https://loom.ly/DbXzw0E
#RareDiseases #Diagnosis #HealthPolicy

📍Last week, ERDERA joined the TETECOU Research & Innovation Day.
🎤 ERDERA Project Manager Başak Uysal highlighted how coordination, data sharing & cross‑stakeholder collaboration can accelerate rare disease research across Europe.
#RareDiseases

🌍 European Reference Networks (#ERNs) connect rare disease experts across Europe. Within #ERDERA, ERNs help bring clinicians, researchers & patients together to share knowledge, advance research and improve care where it’s needed most. Expertise, connected. 💙 #RareDiseases

📣 Registrations are now open for Undiagnosed Day 2026!
On 30 April, join experts in Gdańsk for a two-day, clinician-led meeting focused on phenotyping, diagnosis, and collaboration in undiagnosed rare conditions. 🔗 Find out more about this event: https://loom.ly/kmU2JoY #ERDERA #RareDisease

🚀 First in-person ERDERA National Alignmnet board meeting in Sofia!
#ERDERA brought together representatives from across Europe and beyond, alongside European Commission stakeholders, IRDiRC and other partners to reinforce collective alignment and empower research. 🔗 More: https://loom.ly/K2bkDP8

💡 New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem?
🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8
#RareDiseases #EUResearch #HealthResearch

European Parliament draft report urges a binding EU rare disease action framework - ERDERA A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.

📢 Europe taking a leap towards wider recognition of Rare Disease! The European Parliament’s SANT Committee has released a draft report calling for a binding EU #RareDisease Action Framework. 🔗 Read more https://loom.ly/32gEEag

Gender can shape diagnostic delays and the evidence base in rare-disease research. 👉 #ERDERA looks at what Europe-wide surveys are telling us, and why sex and gender belong in research quality. 🔗 More: https://loom.ly/gO-ECRs #InternationalWomensDay #RareDiseaseAwareness #GenderInResearch

⏳ Las week to submit your Poster Abstract for #ECRD! Submitting a Poster Abstract offers the opportunity to have your work considered for presentation and visibility within the wider rare disease community.
📢 Submit before 6 March: https://loom.ly/LUHeNd0
#RareDiseases #EURORDIS

🚀 Last chance to register for the Masterclass on EU funding & proposal preparation! Join this online session to learn how to find EU calls, build the right partnerships, and prepare a competitive proposal.
🗓 3 March 2026 | 12:30 p.m. (CET)
🔗 Register: https://loom.ly/EY39jgI

🌍 Today is #RareDiseaseDay! ERDERA, the European Rare Diseases Research Alliance, joins the campaign to raise awareness for the 300M people living with a rare disease, and advocate for better care, research, and collaboration 🚀 #RareDiseases #Advocacy #EUHealth #EUInnovation

🌍For #RareDiseaseDay, we’re highlighting the crucial step between discovery and investment‑ready #Innovation. Strengthening early ideas helps ensure scientific progress can move towards real‑world solutions, and truly impact people living with a rare disease.
💚Learn more: https://loom.ly/rOBrTVM

🌍For #RareDiseaseDay, we’re spotlighting the hidden expertise that helps rare disease research move forward. Mentoring, regulatory advice, and methodological guidance give teams the support they need to overcome challenges and strengthen their work.
💚Learn more at #ERDERA: https://loom.ly/_JM9nYw

🌍For #RareDiseaseDay, we highlight how public and private #Funding drives rare disease research. Investment helps teams collaborate, generate evidence, and advance new therapy options.
💚Learn more at #ERDERA: https://loom.ly/zuMFcZw

Daria Julkowska, ERDERA Scientific Coordinator, attended this week the European Parliament for “Make Rare Count" 👉 The discussions highlighted the need for a more coordinated EU‑level action plan to strengthen an effective policy framework for rare diseases across Europe. #ERDERA #RareDisease

🌍 Rare disease data exists, but isn’t always usable — scattered across registries, biobanks, and studies in different formats and languages. 🚀 More #ResearchPower means turning complex data into insights that drive progress worldwide. 👉 Find out how: https://loom.ly/_JM9nYw #RareDiseaseDay

More connections than you can imagine! ✨
💚 For 30M Europeans with a rare disease, collaboration across borders is essential. Learn how ERDERA links experts worldwide: https://loom.ly/_JM9nYw
🔗 Join the #RareDiseaseDay campaign: https://loom.ly/P7AILoo
#MoreThanYouCanImagine #ERDERA

🌍For #RareDiseaseDay, we’re shining a light on the forces that drive progress in rare disease research. Training and education empower researchers, clinicians, and patient communities to accelerate research, improve diagnosis, and deliver better care.💚Learn more at #ERDERA: https://loom.ly/_JM9nYw

📣 Call for young rare disease advocates! ERDERA is inviting young patients aged 12–21 to join the in‑person training in Paris on 23–25 April 2026. 🔗 Find out more and apply: https://loom.ly/yaURaLI
⏳ Application deadline: 8 March 2026 #ERDERA #RareDisease

🌍 For #RareDiseaseDay, ERDERA joins the global movement to promote equity, visibility and progress for people living with rare diseases and their families. 💚 Find out how we turn #ResearchCollaboration into real impact👉 https://loom.ly/_JM9nYw #MoreThanYouCanImagine #ERDERA

Portrait of Professor Hélène Dollfus honored with the EURORDIS Black Pearl Scientific Award on a purple background.

In celebration of her outstanding contributions to rare genetic eye diseases and her deep commitment to the patient community, we are delighted to award the 2026 Black Pearl Scientific Award to Professor Hélène Dollfus. 🥼
Recognising excellence ⤵️
🔗 https://go.eurordis.org/BPA-2026

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