Top Tweets for #Col6
Sudden severe calf pain for Little B that hasn’t gone away since yesterday. Any advice from #MuscularDystrophy community? We’re familiar with cramps and discomfort but this is something else. No redness (DVT). Drs puzzled. Just wondered if anyone else has experienced this. #COL6
📅 TODAY June 6, 2025 is the first ever Collagen VI Myopathy Awareness Day!
🌍 Pathfinders proudly supports raising awareness of Collagen VI Deficiency and the launch of the Global Collagen VI Network.
💙Find out more: https://t.co/SThMzMd6VB
#Col6 #Col6Day #RareDisease
👀 Vols col·laborar amb la investigació en #distròfia muscular per dèficit de #COL6?
El @tarragonamercat acollirà un tast de vins impulsat pel celler @Masvicens i la @Fundacionoelia el 20 de desembre. A més, per cada ampolla venuda, el celler destinarà 50 cèntims a l’entitat 🍇
We were all so happy to be reunited again in Bologna at 8th congress of Collagen VI Italia!! 🇮🇹 Happy to share the results, interact with collaborators and the most importantly meet the patients ❤️!! #col6 #zebrafish #junction #antxr2 @CHANGE_ECM @Telethonitalia
Grateful to @GreatOrmondSt Not particularly good news. Little B‘s condition is progressive & it‘s progressing. Great team ensuring we have right measures today. Now need local teams to action things (without me chasing!) Deep breath, chin up, keep going. #COL6 #MuscularDystrophy
Cybertruck in real thanks to @signaturecustoms 😍🇺🇸📐 #Scewo #ScewoBro #Wheelchair #Wheelchairtravel #Tesla #Electricwheelchair #teslaowners #hagmannsg #powerwheelchair #musculardystrophy #curecmd #BethlemMyopathie #muskelgesellschaft #stairclimbingwheelchair #col6 #Florida #charging #miami #Cybertruck
👩🔬🧫 A Spanish research team led by the @IRSJD_info has characterised extracellular vesicles in patients with #collagenVI related muscular #dystrophy, shedding light on their link to cellular mobility and disease development 👉 https://t.co/ulNtVbAPAq
#raredisease #COL6
Little B down! He does fall a lot & one of the challenges of being semi-ambulant with muscle-weakness is he can’t save himself. Seems ligament damage. Many thanks to local A&E for really kind & impressive care. Review in a few days. #NHS #MuscularDystrophy #COL6
Jetzt online: Abenteuer Diagnose #59 "Die Forscherin und das Geheimnis der Zebrafische" ist in der ARD Audiothek, auf der Visite-Website und bei Apple Podcasts zu finden. #COL6 @UKSH_KI_HL @UniLuebeck @cardiogenetics @dzhk_germany #DGM
https://t.co/arYTveKmQG
Good news from the MTM Registry and the #COL6 Registry!
We have a signed Data Contribution Agreement for C-Path's Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP).
Details below:
https://t.co/S2h9V75MCb
@CPathInstitute
Die Kollagen-VI-Muskeldystrophie gehört zu den Tausenden von selt
enen Krankheiten.
Vielen Dank fürs Teilen.
#RareDiseaseDay2023 #DGM #RareDiseaseDay #col6 #RareDiseases #shareyourcolours #lightupforrare #SeltensindViele #TagDerSeltenenErkrankungen @rarediseaseday
This cheeky chap is my son, Bertie. He plays the drums 🤘When he was 2 he couldn’t take a few steps without falling over & couldn’t save himself. Frightening & upsetting. He didn’t grow out of it. Ullrich’s MD is progressive & we still don’t have treatments. #RareDiseaseDay #COL6
#RareDiseaseDay2023 #DGM #RareDiseaseDay #col6 #RareDiseases @rarediseaseday
@UKSH_KI_HL
@ACHSEeV
Collagen-VI muscular dystrophy is one of the thousands of rare diseases. Here, affected people from Germany give the disease a face to raise awareness. Thanks for watching.
#RareDiseaseDay2023 #DGM #RareDiseaseDay #col6 #RareDiseases @rarediseaseday @UKSH_KI_HL @ACHSEeV
Collagen-VI muscular dystrophy is one of the thousands of rare diseases. Here, affected people from Germany give the disease a face to raise awareness. Thanks for watching.
Auch die Kollagen-VI Muskeldystrophie ist eine der vielen seltenen Krankheiten. #RareDiseaseDay #RareDiseaseDay2023 @ACHSEeV #col6
Endlich ist der Film von P.M. Wissen über das neue MyoShirt auf ServusTV☀️😎🇨🇭
Vor 2 Jahren habe ich erstmals das MyoShirt getestet.
#myosuit #myoshirt #myoswiss #exosuit #exomuscle #ETH #cybathlon #BethlemMyopathie #hagmannsg #col6 #colVI #PMWissen #ServusTV #Scewo
I am looking forward to talking about our COL VI research at The Festival of Genomics & BioData, taking place on the 25-26th of January.
https://t.co/26BusNpMm1
#FOG2023 #COL6 @cardiogenetics @UniLuebeck @UKSH_KI_HL
International research competition results in funding for innovative Collagen 6- related dystrophy research projects | Muscular Dystrophy Canada [As a parent of a child with a COL6 disorder this is great to see] #COL6 #MuscularDystrophy #CMD https://t.co/3w8XUSDHHx
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