Vision-DMD Project
@Vision_DMDProject aiming to advance clinical development of orphan drug Vamorolone for treatment of DMD.
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@worldduchenne
@ParentProjectMD
@ActionDuchenne
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@CureDuchenne
@JettFoundation
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@WorldMuscleSoc
@_ENMC
@oligogirl
@Solid_Bio
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The VISION-DMD project is proud to announce ' Santhera have Received Positive CHMP Opinion Recommending Approval of AGAMREE® (vamorolone) for the Treatment of Duchenne Muscular Dystrophy' Read the press release here CHMP-press-release.pdf (vision-dmd.info)
VISION-DMD rare disease day final project newsletter - mailchi.mp/d0b9b678c1c7/v…
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
''Patients want their data returned after a clinical trial'' Ritchie Head from Ceratium, is talking about the patients preferences on the return of their data following a clinical trial. #DPA2021 #duchenne
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/topline-r…
Latest news and events from VISION-DMD - mailchi.mp/3e7edb9c269e/l…
💬 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/return-of… #Duchenne #ClinicalTrial #HealthData
🚨 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/warning-o…
The power of collaboration: Positive results in VISION DMD study funded by #Horizon2020, #DMD #PatientGroups and US Gov – we are now entering the final phase towards Market Authorisation @santhera @ReveraGen @CORDIS_EU @EUScienceInnov #WDAD2021
Read our latest project news! - mailchi.mp/7bc8205563fd/n…
Today, @Santhera and @ReveraGen announce topline results with Vamorolone in pivotal VISION-DMD study. Santhera will hold a conference call / webcast today at 16:00 CEST, 15:00 BST, 10:00 EDT. Details: globenewswire.com/news-release/2…
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-pati…
Impressive achievement: a case study to enable returning own trial results back to single patients.
📍 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-pati…
📍 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-pati…
Read the latest newsletter here - mailchi.mp/0525c35c62d6/r…
Interesting talks, free and online
Its nearly over - catch our last sessions this afternoon h2020transys.eu/transys-online… #horizoneurope #transys #genderbias #OpenScience
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Who to follow
-
World Duchenne Organization
@worldduchenne -
Parent Project Muscular Dystrophy (PPMD)
@ParentProjectMD -
Action Duchenne
@ActionDuchenne -
TREAT-NMD
@TREAT_NMD -
CureDuchenne
@CureDuchenne -
Jett Foundation
@JettFoundation -
Pathfinders Neuromuscular Alliance
@PathfindersNMA -
Coalition Duchenne
@CoalitionDMD -
JWMDRC
@jwmdrc -
World Muscle Society
@WorldMuscleSoc -
ENMC
@_ENMC -
AnnemiekeAartsma-Rus
@oligogirl -
Solid Biosciences
@Solid_Bio -
Duchenne UK
@DuchenneUK -
Parent Project aps
@Parent_Project
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