Sign up to our second local FSHD awareness day using the link below. This event was a smash hit last year and we can't wait to run it again! #WorldFSHDday #RareDisease
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#WorldFSHDDay
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Join us for the FSHD Engagement Day in Newcastle on 25 Sept 2025! Connect with others, hear from experts & explore key aspects of life with FSHD.
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
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Now for our big news... I'm delighted to announce that the UK FSHD Patient Registry has now 🌟 RELAUNCHED 🌟 onto our new bespoke registry platform, with improved questionnaires and features!
Visit our website to learn more and sign up today!
👀 www.fshd-registry.org.uk 👀
#FSHD #WorldFSHDday
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We were fortunate to attend the @fshdsociety.bsky.social International Research Congress and FSHD Europe Patient Connect meetings last week.
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
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🧡 #20J | Día Mundial de la Distrofia Muscular Facioescapulohumeral #FSHD
📢 Desde los mupis digitales junto al Ayuntamiento, la asociación @fshd_spain nos acerca esta enfermedad minoritaria, genética, degenerativa y sin cura, con su campaña #SalvaNuestraSonrisa
#WorldFSHDDay
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🧡🍊 FSHD: Arretaz ikertzen den gaixotasun genetiko bat
Gaur, #FSHD|renMunduEgunean, #Biogipuzkoaren #DiagnostikoMolekularra|ren Plataformaren lana azpimarratu nahi dugu, distrofia #fazioeskapulohumerala ikertzen duena.
📰 https://f.mtr.cool/svthfvmsnv
#cureFSHD #WorldFSHDDay
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🧡🍊 Hoy 20 de junio, #DíaMundialFSHD: destacamos la investigación de la Plataforma de #DiagnósticoMolecular de #Biogipuzkoa. sobre la distrofia #facioescapulohumeral 🧬
📰 https://f.mtr.cool/jxluoahelp
#FSHD #OrangeSliceChallenge #cureFSHD #SalvaNuestraSonrisa #WorldFSHDDay @FSHDSociety
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It’s #WorldFSHDDay.
One of the most common but least understood types of muscular dystrophy.
It’s what I have.
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