Congratulations Dynacure. 139 medical experts on #raredisease #myotubularmyopathy across 5 countries and 11 U.S. states, including 7 U.S. MDs at findexpertmd.com/d/Congenital_S….
We can also map the KOLs.

ICYMI check out Dr. Jim Dowling's talk on 'Myotubular Myopathy: Lessons from a rare disease' youtube.com/watch?v=z-GA1a…
#RareDisease #myotubular #myopathy #research #myopathie #myotubular myopathy

TheInformationPoint spot my most Beautiful #Sunflower all grown from seeds 2017-2019 & oh yes 2000 🤩😎!! at Meole Brace #Shrewsbury what a glorious day - enjoy #centronuclear #myotubularmyopathy Severn Partnership Visualisation by Severn Partnership

📢NMD4C Steering Committee member Dr. Jim Dowling presented on 'Myotubular Myopathy: Lessons from a rare disease' Can-GARD

Watch the recording below👇👇

#RareDisease #NMD #neuromuscular #myotubularmyopathy

I'm Resting My Eyes.
miahcombat.com/collection/fat…

Register Today! MTM-CNM Connection WillCure
us02web.zoom.us/meeting/regist…
#myotubularmyopathy #mtmcnmfamily #willcuremtm
#accesstotreatment4all

It's not too late to grow a sunflower to raise awareness of centronuclear and myotubular myopathy this summer. Learn more and join in at thebigsunflowerproject.com. #TheBigSunflowerProject #GrowASunflower #CentronuclearMyopathy #MyotubularMyopathy #CentronuclearMyopathies

Will Ward has a rare disease called X-linked Myotubular Myopathy, or MTM. Watch this video to hear Will's story, and register to attend FDA's Rare Disease Day 2021 virtual public meeting to learn more about rare diseases: bit.ly/FDARDD2021 #RareDiseaseStories

We #WalkForBCH #StrongWill Team for #BeggsLab #BostonStrong #ResearchOn #MyotubularMyopathy #XLMTM MTM-CNM Connection Mark Ward

Eat The Ableists, 2023

Get it here: teepublic.com/t-shirt/448472…

#EatTheAbleists #Ableism #ChronicallyFabulous #ChronicIllness #ChronicFam #ChronicCrew #Disabled #Disability #Disability Visibility #Disabled Artist #Art #GraphicDesign #MyotubularMyopathy #ElizabethTrueDesigns

Happy World Rare Disease Day! Raise awareness and #showyourRARE ! Today I'm #blueforthecure #blueforReidandPaley #myotubularmyopathy #centronuclearmyopathy

Sunflowers growing in Methuen, Massachusetts during The Big Sunflower Project 2022.
#TheBigSunflowerProject #Sunflowers #GrowASunflower #Centronuclear #Centronuclear Myopathy #Myotubular #Myotubular Myopathy #Centronuclear Myopathies #NeuromuscularDisease #RareDisease #RareDisease s

#nmcbadgegetsabout checking on our TheInformationPoint #Sunflowers getting their first drink of #rain for ages!

#CentronuclearMyopathy #MyotubularMyopathy #musculardystrophy #cheshire #NotJustABusiness

We are #TogetherStrong Wir sind #ZusammenStark #ensiemeSiamoForti #myotubularmyopathy #cnm welcome to our friends in Italy!
storiesfromourworld.wordpress.com/2019/10/30/a-n… via WordPress.com

So proud of my #StrongWill #mtmwarrior #RareDiseaseDay #RDD2021 #FDA #PatientAdvocate #mtmcnmfamily #CareAboutRare #MyotubularMyopathy #RareDiseaseStories

You totally NEED this hilarious pin! Get it and so many other fun things here: redbubble.com/shop/ap/108116…

Follow Elizabeth True Designs: facebook.com/elizabethtrued…

#EatSleepPoopRepeat #Living #Funny #Art #ConjoinedPoop #DisabledArtist #MyotubularMyopathy

Today is #RareDiseaseDay , a day that means so much to my family. #XLMTM #myotubularmyopathy

We introduce Little Superheroes, a Spanish association of families with children affected by Myotubular Myopathy and other Centronuclear Myopathies. #XLMTM , #MTM , #CNM , #miopatia , #miotubular , #centronuclear , #myopathy , #myotubular myopathy , #myotubular

We live in exciting times! Congratulations Team Dynacure #myotubularmyopathy #CNM #MTM

Dynacure calls it quits on top asset to the dismay of the myotubular myopathy community - More like this Pharm2Market.app | @Dynacure U.S. FDA #breakthroughtherapy #raredisease #ClinicalTrial #MyotubularMyopathy #ClinicalData #Biotech fiercebiotech.com/biotech/dynacu…

Let's help these children!
Register now at fimmitalia.org
#rarediseases
#myotubularmyopathy
#centronucleolar
#myopathy
#findacure
#dynacure

Setting treatment goals for yourself can feel daunting, especially when you’re living with a rare condition like immunoglobulin A (IgA) nephropathy. Here are 5 tips for achieving your treatment goals.

February 28 marks #RareDiseaseDay , a worldwide day dedicated to raising awareness about the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.

Proud of our team member #StrongWill for sharing his story with the #FDA for #RareDiseaseDay #RDD2021 #mtmwarrior #PatientAdvocate #mtmcnmfamily #CareAboutRare #MyotubularMyopathy #RareDiseaseStories

Fantastic morning ⁦Muscular Dystrophy Association⁩ learning about congenital muscle diseases with Jim Dowling, Reghan Foley & Carsten Bonneman #MDAconference #coll6 #mtm1 #myotubularmyopathy #cmd

Do you find it difficult to explain how myeloproliferative neoplasm (MPN) symptoms affect someone in your life? Download the MPN Caregiver Communication Workbook for help navigating conversations with Healthcare Professionals. #MPNSM #FineIsNotEnough