Project aiming to advance clinical development of orphan drug Vamorolone for treatment of DMD.
Joined October 2016
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Vision-DMD Project retweeted
Eric Hoffman, Suzanne Gaglianone @smgag19 from @ReveraGen and Ritchie Head from Ceratium share their experience on what Patient Organizations can do to have data return from clinical trials
#DPA2021 #duchenne
Vision-DMD Project retweeted
Throughout the study, Vamorolone:
→ Showed sustained efficacy across multiple endpoints over 48 weeks
→ Good safety and tolerability profile was confirmed
More about the topline results from the @Vision_DMD study 👇
worldduchenne.org/news/topli…
Vision-DMD Project retweeted
💬 What is the patient perspective on returning individual clinical trial data back to participants after a trial has ended?
Help @Vision_DMD answer this question. Please complete this short 4-minute survey 👇
worldduchenne.org/news/retur…
#Duchenne #ClinicalTrial #HealthData
Vision-DMD Project retweeted
🚨 Important notice on 'stem cell therapy for Duchenne'. Please RT!
→ Currently, there are no approved stem cell therapies for #Duchenne
→ You NEVER pay for a clinical trial
→ If a ‘trial’ is not on clinicaltrials.gov, it is not a legitimate trial
worldduchenne.org/news/warni…
Vision-DMD Project retweeted
Thanks #EUfunded @EJPRareDiseases research co-fund for advertising this White Paper of #EUfunded research @Vision_DMD project: returning individual clinical trial results back to patients - important not only for rare disease patients ! @EU_H2020 #ResearchImpactEU
New VISION-DMD White Paper: Returning Individual Clinical Trial Results Back To Patients. It focuses on addressing the ethical and technical challenges, using the vamorolone clinical trial experience.
#clinicaltrials #scicomm #medtech
vision-dmd.info/return-of-pa…
Vision-DMD Project retweeted
This license will give @Santhera worldwide rights to @Vision_DMD's vamorolone, now also including the major markets Japan and South Korea. Indications include #Duchenne muscular dystrophy.
worldduchenne.org/news/santh…
Vision-DMD Project retweeted
📹 Join the livestream 'Duchenne and the Brain' Sept 7! Researchers, clinicians and families share their experience on #Duchenne and #Becker in relation to the brain.
Please share. We can all learn something from this important aspect in DMD and BMD. 🙏
worldduchenneday.org/wdad202…
Vision-DMD Project retweeted
On #WDAD2020 September 7, @worldduchenne launches an educative talkshow about brain involvement in Duchenne and Becker #MuscularDystrophy.
This live event is for everybody involved and interested in DMD/BMD care and research.
🇪🇸 Con subtítulos en español
worldduchenneday.org/wdad202…
Vision-DMD Project retweeted
On #WDAD2020🎈 September 7, join the global community to raise awareness for #Duchenne and #Becker muscular dystrophy. Together, we are stronger 💪
→ worldduchenneday.org/get-inv…
Vision-DMD Project retweeted
Did you know that #WDAD2020 is taking place on September 7 (7/9) since there are 79 exons in the #Duchenne gene? 🧬
Join us on that day to raise awareness for better care and a cure for those affected by Duchenne and Becker #musculardystrophy! 🎈
How? 👇
worldduchenneday.org/get-inv…
Vision-DMD Project retweeted
New #openaccess paper on care for #Duchenne, Becker & other muscular dystrophies during #COVID19.
→ Corticosteroid & exon skipping
→ Medications
→ Hydroxychloroquine
→ Emergency & respiratory care
→ Rehabilitation
→ Clinical trials
bit.ly/35j7TIc
Vision-DMD Project retweeted
How global solutions can advance the diagnosis of #rarediseases? What is the economic impact? If you've missed the @wef report on data sharing here it is! weforum.org/press/2020/02/ne…
#rarediseases, @eurordis, @Solve_RD #patients, #data, #diagnosis, #rarebarometervoices
Vision-DMD Project retweeted
🎉 Today is #rarediseaseday 🎉
As some of you may be aware the EU Parliament held a Rare Disease Day event last week 🙌
Please click the link to view a short video from the event ➡➡ youtu.be/jrcTm82owEg
Help spread awarebess about #RareDisease
Have a great day 🎈
Vision-DMD Project retweeted
As DMD parents, we know how tough it is to receive the news that your child has been diagnosed with DMD
We want to help you cope with the diagnosis and plan your child’s care, so we created the DMD Family Folder to help
UK families can order a copy here:
duchenneuk.org/resourcesforp…
Vision-DMD Project retweeted
We know that it can be difficult to talk to others about DMD, particularly when you are still trying to come to terms with the diagnosis yourself.
We have created a series of guides as resources for the Duchenne community to help talk to others about DMD: duchenneuk.org/guides-to-dmd
Vision-DMD Project retweeted
The @Vision_DMD meeting provided an update and explanation on the Phase 2B #clinicaltrial and study design on vamorolone.
It’s also one of the first in the field of #Duchenne with a programme to return trial data to participating families. 👏
☑️ vision-dmd.info/vision-dmd-w…
Vision-DMD Project retweeted
Proud to announce that the Czech Republic’s Motol Children’s Hospital is the first European center to be certified through the Certified #Duchenne Care Centre program. Congrats! 🏅
A collaboration between WDO & PPMD
→ worldduchenne.org/first-cdcc
Vision-DMD Project retweeted
The latest @euro_nmd newsletter is now available to view on our website! It includes information about our call for new members, patient advisory board focus, @EJPRareDiseases online course plans, @Share4Rare research pillar pilot and much more!
ern-euro-nmd.eu/newsletter/n…
Vision-DMD Project retweeted
Team members Ian and Karine are looking forward to taking part in @findacure_fdn's #drugrepurposing workshop.
Join them for an insightful (and interactive) session on how #bigdata and #AI can be used to identify new repurposing opportunities.
Register: ow.ly/HgT750wZ8AR
