@duchennefoundation.bsky.social
🌟Thrilled to begin the #EFFecTProject journey as an associated partner!Truly impressed by the high level of expertise and competencies demonstrated by the PhD candidates. Looking forward to the groundbreaking research that the project will bring to the future of rare diseases and health research.
November 6, 2025 at 1:39 PM
🌟Thrilled to begin the #EFFecTProject journey as an associated partner!Truly impressed by the high level of expertise and competencies demonstrated by the PhD candidates. Looking forward to the groundbreaking research that the project will bring to the future of rare diseases and health research.
An inspiring 2 days at the 2nd ERDERA General Assembly (Oct 30-31, 2025, Amsterdam)! We reviewed progress, identified challenges, and focused on improving data-sharing across borders.
#ERDERA #RareDiseaseResearch #DataSharing #Innovation
#ERDERA #RareDiseaseResearch #DataSharing #Innovation
November 4, 2025 at 11:00 AM
An inspiring 2 days at the 2nd ERDERA General Assembly (Oct 30-31, 2025, Amsterdam)! We reviewed progress, identified challenges, and focused on improving data-sharing across borders.
#ERDERA #RareDiseaseResearch #DataSharing #Innovation
#ERDERA #RareDiseaseResearch #DataSharing #Innovation
Happy to announce our paper on FAIRification is now live! A true testament to what patient-driven collaboration can achieve. Congratulations to DDP NLfor this initiative and to our partners WDO, and Foundation 29 for making this possible.
journals.sagepub.com/doi/10.1177/...
journals.sagepub.com/doi/10.1177/...
The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience - Nawel Lalout, Mark D. Wilkinson, Dagmar Wandrei, Adrian Ta...
Background Since 2018, World Duchenne Organization, Dutch Duchenne Parent Project, and Duchenne Data Foundation have been championing efforts to make Duchenne-r...
journals.sagepub.com
October 2, 2025 at 11:00 AM
Happy to announce our paper on FAIRification is now live! A true testament to what patient-driven collaboration can achieve. Congratulations to DDP NLfor this initiative and to our partners WDO, and Foundation 29 for making this possible.
journals.sagepub.com/doi/10.1177/...
journals.sagepub.com/doi/10.1177/...
Counting down to WMS Congress 2025!
We will be presenting our poster during Session 1:
📍 Wednesday, 8 October 2025
🕑 14:30 – 15:30 | Hall X1
📝 Poster 669P: DMD – Treatments
See you in Vienna!
#WMS2025 #PosterPresentation #DMD #RareDiseases #Collaboration #Research
We will be presenting our poster during Session 1:
📍 Wednesday, 8 October 2025
🕑 14:30 – 15:30 | Hall X1
📝 Poster 669P: DMD – Treatments
See you in Vienna!
#WMS2025 #PosterPresentation #DMD #RareDiseases #Collaboration #Research
September 30, 2025 at 10:10 AM
Counting down to WMS Congress 2025!
We will be presenting our poster during Session 1:
📍 Wednesday, 8 October 2025
🕑 14:30 – 15:30 | Hall X1
📝 Poster 669P: DMD – Treatments
See you in Vienna!
#WMS2025 #PosterPresentation #DMD #RareDiseases #Collaboration #Research
We will be presenting our poster during Session 1:
📍 Wednesday, 8 October 2025
🕑 14:30 – 15:30 | Hall X1
📝 Poster 669P: DMD – Treatments
See you in Vienna!
#WMS2025 #PosterPresentation #DMD #RareDiseases #Collaboration #Research
Apply Now for the 2026 Open Academy Trainings
Applications are now open offering intensive, face-to-face training in Barcelona from 25-28 May 2026.
Don’t miss the chance to be part of this unique opportunity! – APPLY NOW!
openacademy.eurordis.org/open-academy...
Applications are now open offering intensive, face-to-face training in Barcelona from 25-28 May 2026.
Don’t miss the chance to be part of this unique opportunity! – APPLY NOW!
openacademy.eurordis.org/open-academy...
Open Academy Schools - EURORDIS Open Academy
The 2026 Open Academy Schools will take place in Barcelona from 25-28 May 2026. The face-to-face intensive training of the Open Academy School on Medicines Research & Development and the Open […]
openacademy.eurordis.org
September 16, 2025 at 8:32 AM
Apply Now for the 2026 Open Academy Trainings
Applications are now open offering intensive, face-to-face training in Barcelona from 25-28 May 2026.
Don’t miss the chance to be part of this unique opportunity! – APPLY NOW!
openacademy.eurordis.org/open-academy...
Applications are now open offering intensive, face-to-face training in Barcelona from 25-28 May 2026.
Don’t miss the chance to be part of this unique opportunity! – APPLY NOW!
openacademy.eurordis.org/open-academy...
We’re proud to announce that the Duchenne Data Foundation is now ISO/IEC 27001:2022 certified!
This milestone reflects our commitment to protecting the community’s trust and ensuring secure, responsible use of data to accelerate research and care.
#DuchenneCommunity #ISO27001 #RareDisease
This milestone reflects our commitment to protecting the community’s trust and ensuring secure, responsible use of data to accelerate research and care.
#DuchenneCommunity #ISO27001 #RareDisease
September 12, 2025 at 9:25 AM
We’re proud to announce that the Duchenne Data Foundation is now ISO/IEC 27001:2022 certified!
This milestone reflects our commitment to protecting the community’s trust and ensuring secure, responsible use of data to accelerate research and care.
#DuchenneCommunity #ISO27001 #RareDisease
This milestone reflects our commitment to protecting the community’s trust and ensuring secure, responsible use of data to accelerate research and care.
#DuchenneCommunity #ISO27001 #RareDisease