World Duchenne Organization @worldduchenne
Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement worldduchenne.org Worldwide Joined July 2017-
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👇 This educational video sheds light on the challenges people living with Duchenne and Becker MD may face and the importance of understanding brain comorbidities. Watch the video by @worldduchenne here: youtu.be/yuB_87NoxGU
#apaperaday from #Myologie2024 in Paris. Today’s pick is from @journal_nd by Zaidman et al on the management of adverse events after treatment with delandistrogene moxeparvovec (aka elevidys) in anticipation of the gene therapy panel coming up later today doing 10.3233/JND-230185
#apaperaday Today's pick is on dystrophin variants in pigs from veterinary pathology by Kamiya et al. Origami figures to commemorate the Japanese authors. I cannot origami a pig yet, but can now also make a cat and a sloth. DOI: 10.1177/03009858231214028
👀🎈 #WDAD2024
📍Gathered in London for the final General Assembly meeting of the BIND project! Over the next two days, all partners unite to advance research on learning & behaviour challenges in #Duchenne and #Becker muscular dystrophy. 👇 Learn more here bindproject.eu
🇲🇽 Welcome Graciela Méndez from Mexico to our board at the World Duchenne Organization! 🤝 Being the founder of @EnlaceDMDB, Graciela's expertise will help us better address the specific challenges in Latin America. Read more: worldduchenne.org/news/world-duc…
🔎 BIND puts great efforts in improving the understanding of brain comorbidities in #Duchenne and #Becker muscular dystrophy. Together, we can help to improve treatments and outcomes for those living with these conditions. → Learn more about BIND: bindproject.eu/about/
Register now for the Duchenne Care Conference 2024 worldduchenne.org/news/duchenne-…
#apaperaday Today’s pick is en route from Acta Myology by Carraro et al. It is a report on a case series and a literature review on cognitive functioning in carriers for dystrophin mutations. DOI: 10.36185/2532-1900-354
Today we received the news of de approval by the EC of AGAMREE (vamorolone) 📣santhera.com/assets/files/p…
#apaperaday Today's pick is by Mercuri et al from @FrontiersIn pediatrics. It is a review and perspective on the early signs for Duchenne muscular dystrophy. Even though Yuzu did not deem it confetti material it is an important paper. DOI: 10.3389/fped.2023.1276144
#apaperaday Today’s pick is again Becker muscular dystrophy themed for the @TREAT_NMD #TREATNMD Becker masterclass taking place in Barcelona. It is from @journal_nd by Clemens et al and reports findings from a natural history study in Becker by CINRG DOI 10.3233/JND-230178
#apaperaday Today's pick is @duchennecentrum themed because we have an in person meeting tonight. It is by Houwen-van Opstal on a collaborative effort to study the course of long finger flexor shorting in Duchenne patients published in @journal_nd DOI: 10.3233/JND-221653
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Sarepta Therapeutics @Sarepta
5K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
CureDuchenne @CureDuchenne
6K Followers 510 Following We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community.
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
DMD Aileleri Derneği @Dmd_aileleri
3K Followers 48 Following Nadir hastalıklar arasında yer alan Duchenne Musküler Distrofisi (DMD), çocukluktan itibaren belirti veren ilerleyici bir kas erimesi hastalığıdır.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
Virginia Arechavala @VArechavala
2K Followers 2K Following Scientist and mum. @ikerbasque Professor @biocrucesHR Interested in #RNAtherapy for #neuromuscular disorders. De Bilbao de toda la vida and adopted Londoner.
Parent Project Muscul.. @ParentProjectMD
7K Followers 1K Following Let's fight for every future. #PPMDeveryfuture #EndDuchenne
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Lesley @Weggster
3K Followers 3K Following Seem to have lost 3 or 4 decades judging by my playlist. Music junkie. End Duchenne Muscular Dystrophy. #MusicTwitter #ActionForAshley. #HollywoodGlitterBall
Jordi Díaz-Manera @querques2000
773 Followers 968 Following Professor of Neuromuscular Diseases at Newcastle University @jwmdrc. Passionate about clinical and basic research, but also about wine, sport, music and books.
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
ENMC @_ENMC
1K Followers 379 Following
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
All Terrain @ATWheelchairs
696 Followers 2K Following Some of the most amazing powered & Manual Wheelchairs you will ever see! Explore places you didn't think possible!
Suewinda @suewinda99410
11 Followers 346 Following
Jess Plant @IAmJessPlant
6K Followers 7K Following (They/She). 5w4, Autistic & Neurodivergent, Carer, ✝️, ♿, Fat, INFP, 🏳️🌈, Left-liberal progressive socialist, Mentally ill.
JoAnn @JoAnn91514695
1 Followers 18 Following
Min Ong @MTfulloflife
51 Followers 86 Following Child neurologist specialising in neuromuscular conditions.
Arman Cakar @Arman_Cakar1
30 Followers 247 Following Neuromuscular Unit, Istanbul Faculty of Medicine, Fellow @ UCL Queen Square IoN
kirubakaranpalaniyapp.. @kirubakaranpal1
1 Followers 21 Following
Joshua Busby @joshuabusby
1K Followers 714 Following Break barriers, achieve goals, & thrive, as I am with Duchenne MD. | Husband, Dad, Minister✝ Certified Life Coach https://t.co/q4VNfhscHe
willie Medina @williemedina45
509 Followers 705 Following believe and trust in God Almighty he has been so faithful to me medical doctor.
Romjan Ali @RomjanAli165183
268 Followers 3K Following
falcon @bos46476740
4 Followers 351 Following
Jake👑🌟👽 @IsraielJakub33
283 Followers 2K Following single, never been married and no kids. Truth is stranger than fiction, can't wait to see what happens next!
kirubakaran27 @kirubakaran2702
2 Followers 7 Following
BiopharmaBytes @BiopharmaBytes
14 Followers 156 Following Biopharma Bytes stands at the forefront of transforming how professionals digest the latest developments in biopharmaceuticals - one byte at a time.
Jose Antonio Oliva B @joseoliva_71
113 Followers 998 Following
Paul Hamilton @p4_hamilton
64 Followers 723 Following
Ajay Malik @AjayMalik497034
1 Followers 17 Following
iPain Foundation Rese.. @iPain_Research
3K Followers 2K Following Supporting @iPainOfficial & @powerofpain Research Projects #NERVEmber
Mohamed Ali @ma8535847
0 Followers 74 Following
the master @pablo_arias_s
4 Followers 64 Following
Loreen Kussauer - Gro.. @KussauerLoreen
0 Followers 9 Following
م..عبدالكري�.. @ENGALALKAMI1985
13 Followers 147 Following
Sarah Kasner @rahdevries
92 Followers 123 Following mom, step-mom, wife, best youngest daughter, sister, employee, yogi, runner
Adriel Hernando @adriel_hah
181 Followers 697 Following PhD student in @Dandergassen lab at TUM | 🇮🇩/🏳️🌈 | Looking at the not-so-inactive X chromosome in cardiovascular disease🫀
w2qnzhviftr @l5d7ryzwt5l
2 Followers 245 Following If you want to make friends, you can contact me anytime TG：https://t.co/aAmpJoM25h WS：https://t.co/oIB0VzHWDU
ILMestatoreRossobruno.. @mestatore9
140 Followers 1K Following mestatore.infingardo.rossobruno.socialista.marxista.marxiano.sionista. estremista di destra.milflover.euroscettico.bisex.Lucio Battisti lover.evoliano.hegel.
Malak Towler @mala_towl
37 Followers 5K Following
RxDataWatch @RxDataWatch
37 Followers 194 Following
Adrien Mcclod @AMcclod93240
79 Followers 5K Following
RupjaniB @RupjaniB
100 Followers 492 Following Passionate about harnessing the power of new technologies and turn health data into trusted intelligence for better health outcomes
Neal_Niu @Neal_Niu
23 Followers 1K Following
Lancaster Films @lancasterfilmz
17 Followers 55 Following 24 year old Filmmaker and podcaster from Yorkshire. Displaced - Out Now on YouTube
Tim Miller @TimMill86122544
2 Followers 9 Following
The Comedy Professor @ProfessorPete11
14 Followers 937 Following Former Prof of Stanford University, Fired for Murdering a Parrot with a Ukulele. So unfair. Free online lessons for learning stuff.😀
Ömer Doğan @malido4147
19 Followers 154 Following
❤️citizen Macca @P15pm
365 Followers 3K Following No turning back, no giving in . originally from Acton west London former station assistant with London Underground now a care giver https://t.co/3PFF5oDm87
Jagan Allu @Jaganmohanallu
65 Followers 990 Following Freelance Biostatistician/ Consultant Data Scientist
Neelam Malik @NeelamMali91805
0 Followers 12 Following
Ehsan Javani 🐉 $MO.. @__EhsanJavani__
1 Followers 48 Following
OffTheShelf @Biotech_DD
1K Followers 2K Following Prices present a biased view of the future. No tweets are a recomendation to buy/sell..may have a position in what I tweet about.
SA @SamA_3210
20 Followers 30 Following
Jon Rees PhD @BiotechJon
1K Followers 1K Following CEO, MitoRx Therapeutics. Pioneering therapeutics in mitochondrial-driven disease.
Annie Ganot @annieganot
49 Followers 100 Following
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Sarepta Therapeutics @Sarepta
5K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
CureDuchenne @CureDuchenne
6K Followers 510 Following We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community.
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
DMD Aileleri Derneği @Dmd_aileleri
3K Followers 48 Following Nadir hastalıklar arasında yer alan Duchenne Musküler Distrofisi (DMD), çocukluktan itibaren belirti veren ilerleyici bir kas erimesi hastalığıdır.
Muscular Dystrophy Ne.. @mdnewstoday_
928 Followers 28 Following We exist to bring you science, research and clinical news about Muscular Dystrophy. We are a free digital publication dedicated to the patient community.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
Virginia Arechavala @VArechavala
2K Followers 2K Following Scientist and mum. @ikerbasque Professor @biocrucesHR Interested in #RNAtherapy for #neuromuscular disorders. De Bilbao de toda la vida and adopted Londoner.
Parent Project Muscul.. @ParentProjectMD
7K Followers 1K Following Let's fight for every future. #PPMDeveryfuture #EndDuchenne
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Lesley @Weggster
3K Followers 3K Following Seem to have lost 3 or 4 decades judging by my playlist. Music junkie. End Duchenne Muscular Dystrophy. #MusicTwitter #ActionForAshley. #HollywoodGlitterBall
Jordi Díaz-Manera @querques2000
773 Followers 968 Following Professor of Neuromuscular Diseases at Newcastle University @jwmdrc. Passionate about clinical and basic research, but also about wine, sport, music and books.
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
ENMC @_ENMC
1K Followers 379 Following
Lousin Mehrabi @lousinmehrabi
10 Followers 0 Following 🤝 Professional Negotiator 🎤 Inspirational Speaker 🌟 Top 50 Most Impactful People on LinkedIn 👉 Join 60K on LinkedIn for negotiation insights https://t.co/lFngV7SOJu
United Nations @UN
16.5M Followers 1K Following Official account of the United Nations. For peace, dignity & equality on a healthy planet.
ImagingNMD @ImagingNMD
51 Followers 84 Following We are dedicated to advancing research for Becker muscular dystrophy (BMD) and Duchenne muscular dystrophy (DMD).
MAGIC @MAGIC_horizon
129 Followers 212 Following Accelerating the development of gene therapies for muscular dystrophies. Funded by @HorizonEU, @UKRI_News and @SBFI_CH
Jon Watts @jwattsgroup
934 Followers 256 Following Oligonucleotide Therapeutics and Chemical Biology. Find us also at @jwattsgroup.bsky.social
UK Research and Innov.. @UKRI_News
100K Followers 658 Following We support world-leading research to push the frontiers of knowledge and generate economic, social, environmental & cultural benefits for all. Learn more 👇
Duchenne Parent Proje.. @parent_peru
193 Followers 74 Following Somos una asociación sin fines de lucro creada y dirigida por padres de niños con Distrofia Muscular De Duchenne y Distrofia Muscular De Becker.
Delhi Association of .. @DAMD_delhi
9 Followers 39 Following Welcome to our NGO, a dedicated organization committed to making a positive impact in the lives of individuals living with Muscular DYSTROPHY
Del Monte Institute f.. @URNeuroscience
2K Followers 1K Following Leading neuroscience discovery & innovation @UofR 📰 https://t.co/TpGBy4lajN 🎦 https://t.co/KLr87DlbRg @urneuroscience.bsky.social #URochesterResearch
karen.hoe OBE💫 �.. @hoe_karen
1K Followers 1K Following inclusion activist and advocate ; disability champion and ambassador . Duchenne mum, fuelled by MAX, views are my own . ✌️💪🙋♀️
DPP BE @dpp_belgium
9 Followers 20 Following
kiera @kierasantry
1K Followers 347 Following Challenge Events Manager at Muscular Dystrophy UK - all views are my own
Emma Jones Parry @ejonesparry
171 Followers 235 Following Director of Development at Musuclar Dystrophy UK. All comments are my own #musclesmatter
NCL_RareDisease @NCL_RareDisease
598 Followers 913 Following @UniofNewcastle Centre of Excellence for Rare Disease works with @NewcastleHosps @NHIPartners & more, to constitute a 'Newcastle RD' community(Tweets V.Hedley)
enomoto kai @dekasohusunu
325 Followers 357 Following 筋ジストロフィーディシェンヌ型の病気を持っています。 療養病棟をでて19歳から重度訪問を利用。 ・大原専門学校卒業 ・NPO法人設立！(ラパージュ） ・福祉検定2級取得済 病気や困ってる方の力になりたいです。
Fabian Willermain @willermain
659 Followers 2K Following Antiviral & Gene Therapy IDM Commercial Engagement Lead at @Pfizer #westandwithscience #Pfizer #ScienceWillWin Views are my own.
TheRareFair @therarefair
801 Followers 818 Following Powered by @tda4rare, The Rare Fair is the original virtual event designed for all members of the rare disease community. https://t.co/m4Ar9Fuzkl
n-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Murdoch Children's Re.. @MCRI_for_kids
13K Followers 1K Following Our team is dedicated to making discoveries to prevent and treat common and rare childhood conditions. Celebrating over 35 years of discovery since 1986.
Humane Genetica Amste.. @GeneticAMS
595 Followers 789 Following De officiële Twitter-pagina van de afdeling Humane Genetica van het Amsterdam UMC. https://t.co/9S29HEojLk / @amsterdamumc
British Myology Socie.. @BritishMyology
418 Followers 214 Following Multidisciplinary professional body of experts founded to promote clinical practice, education and clinical trials in relation to muscle disease.
Ronald Buijsen @BuijsenRonald
605 Followers 809 Following Scientist | RNA therapeutics | neurodegenerative disorders | repeat expansions | iPSC-based disease modeling | #DATS | #CureQ @NeuroD_Lab_LUMC 🇳🇱 | @OTSociety
D'Genes Asoc. de ER @dgenesmurcia
4K Followers 3K Following D'GENES Asociación de #EnfermedadesRaras #EERR #rarediseases #asociacion
Susanne Driffield @s_driffield
508 Followers 1K Following Regional Development Manager at Muscular Dystrophy UK. Proud Trustee of Disability Action Yorkshire. Mum to my DMD superhero Joe. All views are my own.
AP-HP @APHP
83K Followers 2K Following Bienvenue sur le compte de l'AP-HP, Assistance publique-Hôpitaux de Paris, 1er CHU d'Europe. Nous soignons et innovons 365 jours/an. Nous recrutons ! ⤵
Krishnan Guru-Murthy @krishgm
711K Followers 7K Following Main Anchor, Channel 4 News. Unreported World. Ways to Change the World, Strictly Class of 2023, Trustee RBG Kew. Chairman Duchenne UK [email protected]
Pippa Crerar @PippaCrerar
460K Followers 4K Following Political Editor, The Guardian || Political Journalist of the Year [email protected]
Jo Maugham @JolyonMaugham
437K Followers 2K Following Director @GoodLawProject. Barrister. Live your values. Fight the power. Keep the receipts. He/him.
ALASTAIR CAMPBELL @campbellclaret
1.1M Followers 9K Following Writer, communicator, consultant, strategist, mental health campaigner. Does podcast The Rest is Politics with ex Tory minister Rory Stewart.
Deborah Meaden 🇺�.. @DeborahMeaden
718K Followers 3K Following Star of Dragon’s Den,Co -Host of the big Green Money Show,Bestselling Childrens Author- instagram and threads @deborahmeaden.
Ede voor Duchenne @EdevoorDuchenne
353 Followers 366 Following Stichting EVD organiseert het jaarlijkse evenement Sporten voor Duchenne, o.a. om geld in te zamelen voor onderzoek naar Duchenne spierdystrofie
Duchenne DashMAX @duchennedashmax
148 Followers 103 Following Epic cycle adventures, raising money to End Duchenne in 10 @duchenneuk
Ferdi van Overveld @MTB4Duchenne
228 Followers 185 Following Een actieve mountainbike freak die zich in 2010 voor 100% gaat inzetten voor Kim en de ziekte van Duchenne
Zwolse Boyz @B_R4duchenne
313 Followers 663 Following in 2014 gaan we voor de 2e keer duchenne heroes fietsen help ons en sponsor ons samen trappen we duchenne de wereld uit
Heinrich Meermann @CureDuchenneMD
63 Followers 37 Following
Iron Will Challenge @iron_will2023
130 Followers 288 Following The CHALLENGE consists of a 3.8km/2.5mile swim; and 180km/112mile bike ride; and a 42.2km/26.2mile run, over 3 days in the hilly terrain of the Lake District
Recycle 4 Duchenne @Recycle4DMD
64 Followers 81 Following Helping raise money to find a cure for Duchenne Muscular Dystrophy by recycling baby wipe packets, baby food pouches, yoghurt pots, phones & printer cartridges.
RondouFonds4Duchenne @RF4Duchenne
39 Followers 6 Following
A Duchenne MD Cure @HelpOthers2011
102 Followers 268 Following Please pray for a cure for Duchenne Muscular Dystrophy! Boys across the world including our sons Easton and Logan MUST have it!
StBeatDuchenne @StBeatDuchenne
75 Followers 141 Following
Nic Williams @NW_CureDuchenne
34 Followers 93 Following Cure Duchenne is a Non-Profit Join us in our mission, help us save the lives of over 300,000 boys worldwide.https://t.co/mtGYdIKklQ
Benjamin Duchenne @benjaminduchen
6 Followers 17 Following I am a Trance producer I live a unique life with Duchenne Muscular Dystrophy
Gian van de Kerkhof @DuchenneHero
25 Followers 75 Following Duchenne hero, voor de duchenne jongens.... Steun mij in het Duchenne hero project en help deze kids opweg naar een beter toekomst.
Duchenne Dad @DuchenneDad
20 Followers 19 Following
Duchenne MD Dad @duchenneMDdad
27 Followers 61 Following Husband, and father to 2 beautiful boys with my 7 year old Stanley being diagnosed with dmd in 2017. All opinions and emotions my own.
kiraqa @kiraqa
165 Followers 374 Following I am a Mom to 4 amazing kids. One of them, Connor, who is 15, has Duchenne Muscular Dystrophy and Autism.Breaking news: Duchenne UK and Parent Project Muscular Dystrophy award $500,000 to paediatric neuromuscular neurologist Professor Peter Kang MD for research into new muscle cell treatment for DMD. Find out more here: duchenneuk.org/duchenne-uk-an…
👇 This educational video sheds light on the challenges people living with Duchenne and Becker MD may face and the importance of understanding brain comorbidities. Watch the video by @worldduchenne here: youtu.be/yuB_87NoxGU
#apaperaday from #Myologie2024 in Paris. Today’s pick is from @journal_nd by Zaidman et al on the management of adverse events after treatment with delandistrogene moxeparvovec (aka elevidys) in anticipation of the gene therapy panel coming up later today doing 10.3233/JND-230185
🎈 Stay tuned for the kick-off of World Duchenne Awareness Day 2024! We will announce the official #WDAD2024 theme on May 7. → Follow @worldduchenne and @DuchenneDay and keep an eye on our socials. ☀️ Happy weekend!
📍Gathered in London for the final General Assembly meeting of the BIND project! Over the next two days, all partners unite to advance research on learning & behaviour challenges in #Duchenne and #Becker muscular dystrophy. 👇 Learn more here bindproject.eu
🔎 BIND puts great efforts in improving the understanding of brain comorbidities in #Duchenne and #Becker muscular dystrophy. Together, we can help to improve treatments and outcomes for those living with these conditions. → Learn more about BIND: bindproject.eu/about/
#apaperaday Today’s pick is en route from Acta Myology by Carraro et al. It is a report on a case series and a literature review on cognitive functioning in carriers for dystrophin mutations. DOI: 10.36185/2532-1900-354
🥳Congratulations!!! This year, the "Dr. Imelda de Groot Award" goes to Prof Marcela Camara Machado and her team for her work on the Neuromuscular Disease Outpatient Clinic of the Bahiana School of Medicine and Public Health, Salvador Bahia Brazil. youtu.be/Lv9OYroMYRU?si…
Motiveren en inspireren om barrières te breken. Lees hier ons persbericht: duchenne-parent-project.pr.co/231980-motiver…
Erkenning expertise en inzet @Kempenhaeghe. Afgelopen vrijdag werd gevierd dat Kempenhaeghe en de patiëntenorganisatie DPP sinds 2008 nauw samenwerken rond het thema ‘Duchenne en het Brein’. duchenne.nl/nieuws/duchenn…
#apaperaday Today's pick is by Mercuri et al from @FrontiersIn pediatrics. It is a review and perspective on the early signs for Duchenne muscular dystrophy. Even though Yuzu did not deem it confetti material it is an important paper. DOI: 10.3389/fped.2023.1276144
#apaperaday Today’s pick is again Becker muscular dystrophy themed for the @TREAT_NMD #TREATNMD Becker masterclass taking place in Barcelona. It is from @journal_nd by Clemens et al and reports findings from a natural history study in Becker by CINRG DOI 10.3233/JND-230178
Bir çok farklı ülkeden DMD dernekleri, bilim insanları, ilaç firması temsilcileri 3 gün süren Duchenne Patient Academy etkinliği için Atina'da toplandı. DMD Aileleri Derneği olarak katıldığımız bu etkinlikte verimli görüşmeler gerçekleştirdik, güncel bilgiler edindik. #DPA2023
#apaperaday Today's pick is @duchennecentrum themed because we have an in person meeting tonight. It is by Houwen-van Opstal on a collaborative effort to study the course of long finger flexor shorting in Duchenne patients published in @journal_nd DOI: 10.3233/JND-221653
Last weekend, MAGIC was represented by @DuchenneDF at Duchenne Patient Academy 2023. 🎯 Here, we explained how MAGIC aims to develop next-generation models and genetic therapies for rare neuromuscular diseases. → More info at magic-horizon.eu #DPA2023 #GeneTherapy
#apaperaday Duchenne themed again due to @worldduchenne Duchenne Patient Academy, which is still live in Athens. I'm back home to chair a @TREAT_NMD TACT meeting today. Today’s pick is by Gorji et al on HMB supplements for Duchenne published in @MDPIOpenAccess biomedicine
🧠 Today is the first day of Duchenne Patient Academy. We are glad to share we are featured with a poster about the BIND project. Are you at DPA and have questions? Please connect with one of the consortium partners @worldduchenne and @DuchenneDF! #DPA2023 #Duchenne
Duchenne muscular dystrophy has received a very important recognition by the United Nations, which has officially designated 7 September as World Duchenne Awareness Day. This is the UN's first formal acknowledgment of a day dedicated to a rare disease.
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