ERN EuroBloodNet
@erneurobloodnet.bsky.social
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases.
Funded by the European Union.
Funded by the European Union.
Pinned
Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story - YouTube
Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story (Multilingual Versions). This video is available in this playlist with t...
bit.ly
🩸June 19th is #WorldSickleCellDay, and
ERN-EuroBloodNet & @radeep.bsky.social are proud to launch a 2-minute animated video co-created with youth living with #SickleCell.
📺 YouTube playlist: bit.ly/40dkz0P
#SickleCellDisease #WSCD25 #TransitionOfCare #PatientVoices #ERN @mmanupe.bsky.social
ERN-EuroBloodNet & @radeep.bsky.social are proud to launch a 2-minute animated video co-created with youth living with #SickleCell.
📺 YouTube playlist: bit.ly/40dkz0P
#SickleCellDisease #WSCD25 #TransitionOfCare #PatientVoices #ERN @mmanupe.bsky.social
Reposted by ERN EuroBloodNet
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
November 20, 2025 at 8:00 AM
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
📢 Join us for the 2nd Session of the EDITSCD & ERN-EuroBloodNet webinar series!
We are pleased to announce the second webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”
👉Register now!
eurobloodnet.eu/education-2/...
We are pleased to announce the second webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”
👉Register now!
eurobloodnet.eu/education-2/...
November 14, 2025 at 9:45 AM
📢 Join us for the 2nd Session of the EDITSCD & ERN-EuroBloodNet webinar series!
We are pleased to announce the second webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”
👉Register now!
eurobloodnet.eu/education-2/...
We are pleased to announce the second webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”
👉Register now!
eurobloodnet.eu/education-2/...
Reposted by ERN EuroBloodNet
The European Reference Networks (#ERNs) connect experts across Europe so people living with #RareDiseases can access the care they need.
24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems.
Learn more jardin-ern.eu/european-ref...
#EU4Health #HealthUnion
24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems.
Learn more jardin-ern.eu/european-ref...
#EU4Health #HealthUnion
November 6, 2025 at 11:25 AM
The European Reference Networks (#ERNs) connect experts across Europe so people living with #RareDiseases can access the care they need.
24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems.
Learn more jardin-ern.eu/european-ref...
#EU4Health #HealthUnion
24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems.
Learn more jardin-ern.eu/european-ref...
#EU4Health #HealthUnion
Reposted by ERN EuroBloodNet
Two productive days in San Sebastian for the #SYNTHEMA consortium have come to an end. Lively discussions, clear goals for the final year: a recap publication on synthetic data in haematology, joint training with @erneurobloodnet.bsky.social, new papers, and the SYNTHEMA platform launch
synthema.eu
synthema.eu
November 6, 2025 at 10:00 AM
Two productive days in San Sebastian for the #SYNTHEMA consortium have come to an end. Lively discussions, clear goals for the final year: a recap publication on synthetic data in haematology, joint training with @erneurobloodnet.bsky.social, new papers, and the SYNTHEMA platform launch
synthema.eu
synthema.eu
🚨 Register now for the upcoming ERN-EuroBloodNet Thursdays Webinars!
The #ThursdaysWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology
👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...
The #ThursdaysWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology
👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...
November 5, 2025 at 10:50 AM
🚨 Register now for the upcoming ERN-EuroBloodNet Thursdays Webinars!
The #ThursdaysWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology
👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...
The #ThursdaysWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology
👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...
🎧Discover the latest episode of the European Hematology Association (EHA) Unplugged podcast, “Point-of-care Tests for Neonatal Screening of Sickle Cell Disease”, featuring Prof. Gulbis Béatrice, Co-Coordinator of ERN-EuroBloodNet.
🎙️Listen to the full episode here:
www.youtube.com/watch?v=OwIe...
🎙️Listen to the full episode here:
www.youtube.com/watch?v=OwIe...
Point-of-care Tests for Neonatal Screening of Sickle Cell Disease (with Prof Béatrice Gulbis)
YouTube video by European Hematology Association
www.youtube.com
October 30, 2025 at 11:53 AM
🎧Discover the latest episode of the European Hematology Association (EHA) Unplugged podcast, “Point-of-care Tests for Neonatal Screening of Sickle Cell Disease”, featuring Prof. Gulbis Béatrice, Co-Coordinator of ERN-EuroBloodNet.
🎙️Listen to the full episode here:
www.youtube.com/watch?v=OwIe...
🎙️Listen to the full episode here:
www.youtube.com/watch?v=OwIe...
Reposted by ERN EuroBloodNet
SYNTHEMA builds on strong ethical and collaborative foundations:
🩺 @erneurobloodnet.bsky.social – Europe’s rare haematology network
📊Contributions to ENROL, EU RD Platform, and
@radeep.bsky.social
🤝Partnership with Flower - open-source federated learning for privacy-preserving AI
🩺 @erneurobloodnet.bsky.social – Europe’s rare haematology network
📊Contributions to ENROL, EU RD Platform, and
@radeep.bsky.social
🤝Partnership with Flower - open-source federated learning for privacy-preserving AI
October 28, 2025 at 10:25 AM
SYNTHEMA builds on strong ethical and collaborative foundations:
🩺 @erneurobloodnet.bsky.social – Europe’s rare haematology network
📊Contributions to ENROL, EU RD Platform, and
@radeep.bsky.social
🤝Partnership with Flower - open-source federated learning for privacy-preserving AI
🩺 @erneurobloodnet.bsky.social – Europe’s rare haematology network
📊Contributions to ENROL, EU RD Platform, and
@radeep.bsky.social
🤝Partnership with Flower - open-source federated learning for privacy-preserving AI
🎥New video! Building bridges for better transitions in Sickle Cell Disease
How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?
🎬Watch now: youtu.be/POEBC0YEMgM?...
#ERNs #ERNeu
How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?
🎬Watch now: youtu.be/POEBC0YEMgM?...
#ERNs #ERNeu
The Charter for optimal care transitions from paediatric to adult care in sickle cell disease
YouTube video by ERN-EuroBloodNet's EDU
youtu.be
October 28, 2025 at 9:23 AM
🎥New video! Building bridges for better transitions in Sickle Cell Disease
How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?
🎬Watch now: youtu.be/POEBC0YEMgM?...
#ERNs #ERNeu
How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?
🎬Watch now: youtu.be/POEBC0YEMgM?...
#ERNs #ERNeu
📢Not yet registered? Don't miss the next Thursday webinar in three days!
The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).
👉 Register here: lnkd.in/dFCJVT2R
#ERNeu #ERNs #hematology
The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).
👉 Register here: lnkd.in/dFCJVT2R
#ERNeu #ERNs #hematology
October 27, 2025 at 9:24 AM
📢Not yet registered? Don't miss the next Thursday webinar in three days!
The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).
👉 Register here: lnkd.in/dFCJVT2R
#ERNeu #ERNs #hematology
The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).
👉 Register here: lnkd.in/dFCJVT2R
#ERNeu #ERNs #hematology
Presenting the Charter for Optimal Transitions in #SCD at the European Parliament🌍
A collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between pediatric and adult services.
🔗https://bit.ly/4qk0npD
A collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between pediatric and adult services.
🔗https://bit.ly/4qk0npD
October 24, 2025 at 11:33 AM
Presenting the Charter for Optimal Transitions in #SCD at the European Parliament🌍
A collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between pediatric and adult services.
🔗https://bit.ly/4qk0npD
A collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between pediatric and adult services.
🔗https://bit.ly/4qk0npD
🌍Members, Affiliated Partners & Patient Organisations: Get ready for the 7th ERN-EuroBloodNet Progress Meeting!
🗓 Thursday, 6th November | 💻 Online
Take a look at the provisional agenda and register here: eurobloodnet.eu/news/678/ern...
#ERNeu #ERNs #HealthUnion #EU4Health
🗓 Thursday, 6th November | 💻 Online
Take a look at the provisional agenda and register here: eurobloodnet.eu/news/678/ern...
#ERNeu #ERNs #HealthUnion #EU4Health
October 24, 2025 at 11:30 AM
🌍Members, Affiliated Partners & Patient Organisations: Get ready for the 7th ERN-EuroBloodNet Progress Meeting!
🗓 Thursday, 6th November | 💻 Online
Take a look at the provisional agenda and register here: eurobloodnet.eu/news/678/ern...
#ERNeu #ERNs #HealthUnion #EU4Health
🗓 Thursday, 6th November | 💻 Online
Take a look at the provisional agenda and register here: eurobloodnet.eu/news/678/ern...
#ERNeu #ERNs #HealthUnion #EU4Health
Reposted by ERN EuroBloodNet
📣#Hiring alert at @vhir.bsky.social !
Your role:
✅Ensure smooth communication across teams and stakeholders;
✅Oversee documentation and data management;
✅Act as a bridge between the RADeep coordinating team, data providers, and external collaborators.
🔗 jobs.vhir.org/jobs/6487424...
Your role:
✅Ensure smooth communication across teams and stakeholders;
✅Oversee documentation and data management;
✅Act as a bridge between the RADeep coordinating team, data providers, and external collaborators.
🔗 jobs.vhir.org/jobs/6487424...
September 26, 2025 at 9:42 AM
📣#Hiring alert at @vhir.bsky.social !
Your role:
✅Ensure smooth communication across teams and stakeholders;
✅Oversee documentation and data management;
✅Act as a bridge between the RADeep coordinating team, data providers, and external collaborators.
🔗 jobs.vhir.org/jobs/6487424...
Your role:
✅Ensure smooth communication across teams and stakeholders;
✅Oversee documentation and data management;
✅Act as a bridge between the RADeep coordinating team, data providers, and external collaborators.
🔗 jobs.vhir.org/jobs/6487424...
✅ Day 1 | ERN-EuroBloodNet & @radeep.bsky.social – #SCD Patients Session at #ASCAT2025 !
Sexual Health Program for Patients with Sickle Cell Disease
🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health
#ERNs #hematology #RADeep #ERNeu #ASCAT2025
Sexual Health Program for Patients with Sickle Cell Disease
🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health
#ERNs #hematology #RADeep #ERNeu #ASCAT2025
October 3, 2025 at 8:28 AM
✅ Day 1 | ERN-EuroBloodNet & @radeep.bsky.social – #SCD Patients Session at #ASCAT2025 !
Sexual Health Program for Patients with Sickle Cell Disease
🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health
#ERNs #hematology #RADeep #ERNeu #ASCAT2025
Sexual Health Program for Patients with Sickle Cell Disease
🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health
#ERNs #hematology #RADeep #ERNeu #ASCAT2025
🚀EURORDIS has recently launched a new global survey exploring what helps people live with a rare or undiagnosed condition, as well as their families.
Make your voice heard and take the survey before 16 November!
🔗https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
Make your voice heard and take the survey before 16 November!
🔗https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
September 22, 2025 at 9:34 AM
🚀EURORDIS has recently launched a new global survey exploring what helps people live with a rare or undiagnosed condition, as well as their families.
Make your voice heard and take the survey before 16 November!
🔗https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
Make your voice heard and take the survey before 16 November!
🔗https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
📢Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe!
👉 bit.ly/46JYtGW
#ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social
👉 bit.ly/46JYtGW
#ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social
Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs) | News | EuroBloodNet
The survey aims to understand how young patients with rare and complex conditions are transitioned from paediatric to adult care, and how care is transferred.
bit.ly
September 19, 2025 at 11:06 AM
📢Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe!
👉 bit.ly/46JYtGW
#ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social
👉 bit.ly/46JYtGW
#ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social
🚀Registration now open for the Full Program! Just 2 weeks to go before the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders begins!
🎯This accredited European online educational program is designed for healthcare professionals.
eurobloodnet.eu/education/to...
🎯This accredited European online educational program is designed for healthcare professionals.
eurobloodnet.eu/education/to...
September 10, 2025 at 10:47 AM
🚀Registration now open for the Full Program! Just 2 weeks to go before the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders begins!
🎯This accredited European online educational program is designed for healthcare professionals.
eurobloodnet.eu/education/to...
🎯This accredited European online educational program is designed for healthcare professionals.
eurobloodnet.eu/education/to...
💻Don't miss this opportunity! ERDERA will mark its 1st anniversary with a stimulating free online event open to the entire rare disease community.
Register here: events.teams.microsoft.com/event/8a710c...
Register here: events.teams.microsoft.com/event/8a710c...
🚀 Be part of ERDERA’s 1st anniversary Open Session on 30 Oct! Hear inspiring voices in neurology, neurometabolic diseases & patient advocacy, and discover how #ERDERA is transforming rare disease research.
🔗 Find out more and register: https://loom.ly/6r3obgE
#RareDiseases
🔗 Find out more and register: https://loom.ly/6r3obgE
#RareDiseases
September 9, 2025 at 11:38 AM
💻Don't miss this opportunity! ERDERA will mark its 1st anniversary with a stimulating free online event open to the entire rare disease community.
Register here: events.teams.microsoft.com/event/8a710c...
Register here: events.teams.microsoft.com/event/8a710c...
📣Have you registered yet? Join us on 𝗠𝗼𝗻𝗱𝗮𝘆 𝘁𝗵𝗲 𝟭𝟱𝘁𝗵 𝗮𝘁 𝟱:𝟬𝟬 𝗣𝗠 for the ERN-EuroBloodNet Patients Webinar: Gene Therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II.
📝Register now! bit.ly/3IdP6G0
#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
📝Register now! bit.ly/3IdP6G0
#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
September 9, 2025 at 9:43 AM
📣Have you registered yet? Join us on 𝗠𝗼𝗻𝗱𝗮𝘆 𝘁𝗵𝗲 𝟭𝟱𝘁𝗵 𝗮𝘁 𝟱:𝟬𝟬 𝗣𝗠 for the ERN-EuroBloodNet Patients Webinar: Gene Therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II.
📝Register now! bit.ly/3IdP6G0
#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
📝Register now! bit.ly/3IdP6G0
#ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu
🌍The World Orphan Drug Congress Europe is the largest global event for orphan drugs and rare diseases, attracting over 2,000 attendees, 250+ industry leaders, and 130+ exhibitors, discussing topics from the entire orphan drug lifecycle.
📝 secure.terrapinn.com/V5/step1.asp...
#WODC #RareDiseases
📝 secure.terrapinn.com/V5/step1.asp...
#WODC #RareDiseases
August 18, 2025 at 10:09 AM
🌍The World Orphan Drug Congress Europe is the largest global event for orphan drugs and rare diseases, attracting over 2,000 attendees, 250+ industry leaders, and 130+ exhibitors, discussing topics from the entire orphan drug lifecycle.
📝 secure.terrapinn.com/V5/step1.asp...
#WODC #RareDiseases
📝 secure.terrapinn.com/V5/step1.asp...
#WODC #RareDiseases
🎯Outcomes of the successful working days at the #EHA2025 Congress!
ERN-EuroBloodNet participated actively with:
📍A dedicated booth;
🎤Active participation in oral & poster sessions;
🤝The Board of Network (BoN) meeting.
eurobloodnet.eu/news/660/out...
@ec.europa.eu @euonehealth.bsky.social
ERN-EuroBloodNet participated actively with:
📍A dedicated booth;
🎤Active participation in oral & poster sessions;
🤝The Board of Network (BoN) meeting.
eurobloodnet.eu/news/660/out...
@ec.europa.eu @euonehealth.bsky.social
August 14, 2025 at 11:35 AM
🎯Outcomes of the successful working days at the #EHA2025 Congress!
ERN-EuroBloodNet participated actively with:
📍A dedicated booth;
🎤Active participation in oral & poster sessions;
🤝The Board of Network (BoN) meeting.
eurobloodnet.eu/news/660/out...
@ec.europa.eu @euonehealth.bsky.social
ERN-EuroBloodNet participated actively with:
📍A dedicated booth;
🎤Active participation in oral & poster sessions;
🤝The Board of Network (BoN) meeting.
eurobloodnet.eu/news/660/out...
@ec.europa.eu @euonehealth.bsky.social
Reposted by ERN EuroBloodNet
Sickle Cell Disease is rare in the EU (fewer than 5 in 10,000 people), but its prevalence is rising across Europe due to migration and shifting demographics. #SYNTHEMA uses privacy-preserving AI and synthetic data to advance diagnosis, research & treatment.
👉 synthema.eu
👉 synthema.eu
June 24, 2025 at 8:23 AM
Sickle Cell Disease is rare in the EU (fewer than 5 in 10,000 people), but its prevalence is rising across Europe due to migration and shifting demographics. #SYNTHEMA uses privacy-preserving AI and synthetic data to advance diagnosis, research & treatment.
👉 synthema.eu
👉 synthema.eu
Reposted by ERN EuroBloodNet
Last month, #SYNTHEMA and #GenoMed4All joined #EHA2025 in Milan to present our work on AI-powered federated platforms for data anonymisation & synthetic data. We also shared new insights on hydroxyurea treatment in SCD.
Read the recap: synthema.eu/2025/06/17/s...
#AIforHealth
Read the recap: synthema.eu/2025/06/17/s...
#AIforHealth
July 3, 2025 at 7:23 AM
Last month, #SYNTHEMA and #GenoMed4All joined #EHA2025 in Milan to present our work on AI-powered federated platforms for data anonymisation & synthetic data. We also shared new insights on hydroxyurea treatment in SCD.
Read the recap: synthema.eu/2025/06/17/s...
#AIforHealth
Read the recap: synthema.eu/2025/06/17/s...
#AIforHealth
🚨Hiring alert! We are looking for an experienced, motivated and committed Scientific delivery coordinator to join our dynamic team at Vall d’Hebron Institute of Research, Barcelona!
✒️Apply now: jobs.vhir.org/jobs/5909298...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
✒️Apply now: jobs.vhir.org/jobs/5909298...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
August 11, 2025 at 8:02 AM
🚨Hiring alert! We are looking for an experienced, motivated and committed Scientific delivery coordinator to join our dynamic team at Vall d’Hebron Institute of Research, Barcelona!
✒️Apply now: jobs.vhir.org/jobs/5909298...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
✒️Apply now: jobs.vhir.org/jobs/5909298...
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
🗨️How can rare disease research better involve patients?
#ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research.
📆Open until mid-July
🔐Confidential
🔗Take the survey: shorturl.at/c03db
#RareDisease
#ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research.
📆Open until mid-July
🔐Confidential
🔗Take the survey: shorturl.at/c03db
#RareDisease
July 11, 2025 at 1:29 PM
🗨️How can rare disease research better involve patients?
#ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research.
📆Open until mid-July
🔐Confidential
🔗Take the survey: shorturl.at/c03db
#RareDisease
#ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research.
📆Open until mid-July
🔐Confidential
🔗Take the survey: shorturl.at/c03db
#RareDisease