@dathax

Duchenne Patient Advocate PDCO member in European Medicines Agency, Board Member of World Duchenne Organization, Board Member of EPF

 Athens Greece
Joined February 2013
  • Tweets50
  • Following63
  • Followers188
ATHANASIOU DIMITRIOS retweeted
elizabeth vroom@elizabethvroom5 Apr 2022
We waited far too long for the results of the For-DMD study, but here they are: jamanetwork.com/journals/jam…

Effect of Different Corticosteroid Dosing Regimens on Clinical Outcomes in Duchenne Muscular...

This randomized clinical trial compares the efficacy and adverse effects of the 3 most frequently prescribed corticosteroid regimens for boys with Duchenne muscular dystrophy.

jamanetwork.com
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ATHANASIOU DIMITRIOS retweeted
Patient Worthy@PatientWorthy6 Sep 2021
September 7 is World Duchenne Awareness Day: Spreading Duchenne Muscular Dystrophy Awareness bit.ly/3jNlWyr #DuchenneMuscularDystrophy #WDAD2021 #RareDisease @worldduchenne
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.@VitalTransform is proud to be supporting the 1st Int Conference on Rare Diseases: “Building a Pathway from Diagnosis to Access” 1-2 March 2021 Info & Registration -> bit.ly/2MkWEd7 #rarediseasesconference21
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Do not miss this - Register and Share! Advancing patient-driven research in @Share4Rare Join us in the Virtual Coffee with patient organisations on Tuesday, June 16, 16:00 CEST. @eurordis @eupatients @eupatientsforum bit.ly/37fugzh
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ATHANASIOU DIMITRIOS retweeted
Michael Makris@ProfMakris22 Oct 2019
Novartis has sold 100 lots of its gene therapy for spinal muscular atrophy so far this year at $1.75 million a shot. Not much uptake for annual payments. This is a disease with no other treatment. I do not believe these data will apply to #hemophilia. tiny.cc/cyozez
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On September 7, I bring my light for World Duchenne Awareness Day to raise awareness on #Duchenne muscular dystrophy. Join @DuchenneDay for #WDAD2019 🎈 youtu.be/M8N6egJ3R80
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European regulators’ views on a wearable-derived performance measurement of Ambulation for Duchenne Muscular Disease regulatory trials
AddThis | Home doi.org/10.1016/j.nmd.2019.0…
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ATHANASIOU DIMITRIOS retweeted
Just Treatment 💊@JustTreatment5 Jun 2019
When the medicine your child needs is priced too high for the NHS what do you do? #CFBuyersClub #OrkambiNow bbc.co.uk/news/health-483577…

Inside the UK's drug buyers' clubs

Patients losing out as a result of high prices are finding alternative ways to get their medicine.

bbc.co.uk
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ATHANASIOU DIMITRIOS retweeted
TranspariMED@TranspariMED30 Apr 2019
Delighted to see strong media coverage of our new study across Europe At a glance, here's how Europe's top 30 medical universities performed on #clinicaltrials transparency transparimed.org/single-post…
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ATHANASIOU DIMITRIOS retweeted
Vytenis Andriukaitis
@V_Andriukaitis27 Jun 2019
Three questions yesterday @EFPIA dinner: 1 What does #EU contribute to #health & care? 2 Are we adding the maximum value to #patients, families, & healthcare workers? 3 Can we do more to lessen the burden on health systems today & in the future? Answers 👉europa.eu/!bQ79GB
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ATHANASIOU DIMITRIOS retweeted
EFGCP@EFGCP27 Jun 2019
#FDA officials see 'missed opportunity' with patient outcomes in clinical trials: FDA has shown an interest in PROs,: The information is seen as a valuable tool for improving clinical trial designs, guiding drug approvals & supporting label decisions. biopharmadive.com/news/fda-o…

FDA officials see 'missed opportunity' with patient outcomes in clinical trials

The information is viewed as a valuable tool for improving trial design, guiding drug approvals and supporting label decisions, but its reach has been limited.

biopharmadive.com
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Thank you @YNatsis for the meaningful questions !
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Great @DuchenneDay
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ATHANASIOU DIMITRIOS retweeted
Larry Luxner@LLuxner25 Jul 2018
Read my profile in Muscular Dystrophy News Today on how #Duchenne affects one #Greek family. @ParentProjectMD #endDuchenne @DuchenneUK @MitchelsJourney @mdahellas @uppmdduchenne bit.ly/2JUdhoZ
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ATHANASIOU DIMITRIOS retweeted
Share4Rare_eng@Share4Rare_eng28 Jun 2018
The new platform for paediatric rare diseases has arrived! Check out the new website here: share4rare.org 🚀 Big thanks to @omada_int @Melanoma_MRV @worldduchenne @la_UPC @SJDbarcelona_es @The_Synergist 💜 #CitizenScience #S4R_eu #PatientEngagement #Live #WebsiteLaunch
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ATHANASIOU DIMITRIOS retweeted
Vision-DMD Project@Vision_DMD26 Jun 2018
Vamorolone progress cofunded by foundations @ParentProjectMD @mdausa @DuchenneUK @alljoinjack @duchennemd @SOSsaveoursons @ActionDuchenne @CureDuchenne @RyansQuestOrg @alexswish @PietrosFight @Michaelscause1 @DuchenneRF xitter.cf/vision_dmd/status/1011…
Vision-DMD Project@Vision_DMD26 Jun 2018
Replying to @ReveraGen
@ReveraGen release details of vision-dmd phase 2a study vision-dmd.info/vision1/wp-c… Eric Hoffman will present @ParentProjectMD Pls RT @worldduchenne @trinds_nmd @TREAT_NMD
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#ppmdconference there was mention about the FDA being prepared to extrapolate from trial populations to wider populations. The EMA seems less so, as well as payers. How can we address this with pharma?
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ATHANASIOU DIMITRIOS retweeted
EU Medicines Agency
@EMA_News27 Jun 2018
#EMA carried out a total of 925 activities involving #patients and 445 activities involving #HealthcareProfessionals during 2017. Read more in our latest Stakeholder Engagement report: bit.ly/2IvNnaf
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ATHANASIOU DIMITRIOS retweeted
EFGCP@EFGCP29 Jun 2018
📣Make sure to register at the best rate! 2 days left to benefit from Early Bird rates for the Joint #EFGCP & @DrugInfoAssn Better Medicines for Children Conference: efgcp.eu/cgi?lg=en&pag=3846&… #Paediatrics2018
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