Duchenne Data Foundation

Bringing data to life to improve the world of dystrophinopathies

[Duchenne Data Foundation @DuchenneDF]

Happy to announce our paper on FAIRification is now live ! A true testament to what patient-driven collaboration can achieve. Read here: https://t.co/AskgzrKjOR

[Duchenne Data Foundation @DuchenneDF]

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

[Duchenne Data Foundation @DuchenneDF]

Applications are now open for the 2026 edition of the Open Academy Schools, 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!

https://t.co/owya6x8sH7

[Duchenne Data Foundation @DuchenneDF]

We’re proud to announce that DDF 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

[Duchenne Data Foundation @DuchenneDF]

🎓 The #EURORDIS Open Academy Alumni Mentoring Programme is here!
Designed to help trained advocates grow, connect & lead through peer support and expert mentorship.
🔗 Learn more: https://t.co/aQltdL12g4
#RareDisease #PatientAdvocacy #OpenAcademy#DDF

[Duchenne Data Foundation @DuchenneDF]

🚨 Registration open! Join the free FAIR Training Programme on health & rare disease data 🧬 24–26 Sept 2025, 13:30–17:00 CET, online. Learn to make data Findable, Accessible, Interoperable & Reusable!

Register: https://t.co/q1As3nQ56w

#FAIRdata #RareDisease#DDF

[Duchenne Data Foundation @DuchenneDF]

The role of patient advocacy groups in the EU research projects' design and implementation is crucial, especially when is concerning management of research data! https://t.co/xM6VSZiw9r #MAGICProject #Dystrophinopathy #DataScience #GeneticTherapies

[Duchenne Data Foundation @DuchenneDF]

🚨 Good news! The Open Academy 2025 call for applications is now extended until November 1st! 🌍
https://t.co/lpgJGoFMLg
#OpenAcademy2025 #ApplyNow

[Duchenne Data Foundation @DuchenneDF]

⏰A call for action!
https://t.co/G8oRwFI1tf

[ERDERA @ERDERA_org]

🚀 Join us for the ERDERA launch event!

🗓️ 28 Oct 2024
⏰ 14:00-16:15 CET
💻 Online

Don't miss insights from top experts & learn how @ERDERA_org is set to change the landscape of rare diseases research!

👉 RSVP here:https://t.co/Xb3trTuebd

#RareDiseases @EU_HaDEA

[Duchenne Data Foundation @DuchenneDF]

🌐 Are you attending the 29th Annual Congress of World Muscle Society?
Visit our virtual poster!For the first time ever the World Muscle Society has a poster section entirely dedicated to dystrophin and the brain!

[Duchenne Data Foundation @DuchenneDF]

📣 Apply Now for the 2025 Open Academy Trainings!
Applications are now open for the 2025 edition of the Open Academy Schools, offering intensive, face-to-face training in Barcelona from 2-5 June 2025.

See more information here

https://t.co/lpgJGoFMLg

[Duchenne Data Foundation @DuchenneDF]

Don't miss out this webinar!
https://t.co/4GSldbuxvr

[BINDproject @EU_BIND]

You are invited to join the BIND Patient Community webinar 'Understanding the role of dystrophin in the brain'

🗓 Monday, September 23
🕕 18:00 CEST
📍 Online via Zoom

👉 Please register your interest here: https://t.co/WmO55sycui

[Duchenne Data Foundation @DuchenneDF]

Looking forward to joining forces with LUMC to improve our understanding of the cognitive profile in people living with DMD and BMD.
https://t.co/k9tHEdPscB

[BINDproject @EU_BIND]

Thrilled to announce that @LUMC_Leiden and @DuchenneDF have secured funding to further continue deep phenotyping of the brain in Duchenne and Becker muscular dystrophy.

🤝 This will further enhance the understanding of brain involvement in DMD and BMD.
https://t.co/ro6k1S1Nv6

[Duchenne Data Foundation @DuchenneDF]

@EU_BIND @LUMC_Leiden Looking forward to collaborating with LUMC on this project to improve our understanding of the cognitive profile in people living with DMD and BMD.

[Duchenne Data Foundation @DuchenneDF]

📢 We are thrilled to announce our participation in the ERDERA patnership launched just last week! 🚀

Read ERDERA’s press release to learn more

https://t.co/2q96MR1rhY

#ERDERA #RareDiseases #ResearchInnovation

[Duchenne Data Foundation @DuchenneDF]

Learn more on the MAGIC project's mission and objectives here: https://t.co/bJvIh8Umzo

[Duchenne Data Foundation @DuchenneDF]

🌐 Explore the future of neuromuscular disorder research with the MAGIC project. Learn more here: https://t.co/wIH50s47g7

[Duchenne Data Foundation @DuchenneDF]

🌟 Exciting News on a new MOOC (Massive Open Online Course) titled “Innovative Therapies and Personalized Medicine for Rare Diseases” 🌟

The MOOC will start on Monday July 8th, and enrollments is now open at: https://t.co/H1eLFCab5g

[Duchenne Data Foundation @DuchenneDF]

🌟 Exciting News on a new MOOC (Massive Open Online Course) titled “Innovative Therapies and Personalized Medicine for Rare Diseases” 🌟

The MOOC will start on Monday July 8th, and enrollments is now open at: https://t.co/H1eLFCaIUO

[Duchenne Data Foundation @DuchenneDF]

Prof. Francesco Saverio Tedesco from the MAGIC project presented the innovative approaches and significant implications of the MAGIC Project at the American Society of Gene & Cell Therapy (ASGCT) Annual Meeting in Baltimore, USA (May 7-11 2024).

https://t.co/fkcS0X9JYj