Need to communicate complex info that’s accessible and easily understood? With Genomics England, we’ve developed a ‘how to’ toolkit for creating accessible genetic and rare condition-specific information. Find the toolkit and additional resources here: ow.ly/5MAo50SG3OO

We stand against racism, Islamophobia, and all forms of discrimination. We support everyone with a muscle wasting condition and their loved ones. If you need support, call our helpline at 0800 652 6352, open Monday to Thursday 10 am–2 pm or email us [email protected].

🔬 Calling all up-and-coming #MyotonicDystrophy researchers! Apply for MDF's 2025 Early Career Grants- a two-year $190k award to support the next generation of #DMResearchers & their work on treatment, care, and support. 🌟 Apply for #funding by Sept 13: myotonic.org/myotonic-dystr…

Being a sibling to someone with a muscle wasting condition can be a challenging experience. We know it can sometimes feel lonely. Our virtual therapy groups are here to bring you together with others who understand what you're going through. #SiblingsSupportGroup 1/2

Our The Chronicle team is reporting on an incredible display of unity, community spirit and hope in the West End of Newcastle, which had been targeted tonight. This is our city. Hate will never win here. Updates by Sam Volpe & pics by Iain Buist: chroniclelive.co.uk/news/north-eas…

Proud to have been a part of the huge crowd defending Newcastle from the far right last night ✊ This West End lass will always have faith in our fantastic community to stand up and show what Geordies are all about!

🚨 Calling all uni students from the SMA Community! We’re gearing up for our next podcast and want YOU to join us! Got questions, stories, or want to be a guest? Check out how you can get involved here: smauk.org.uk/rgza 🎧 #SMA #Podcast #University

Looking to stay in the loop on research across the North East and North Cumbria region? 🔍 Follow the new Routes to Research X account for updates on regional research opportunities, insights and more! 👉Routes to Research routestoresearch.co.uk

👀Read about the latest developments planned for our JWMDRC neuromuscular patient registries in my blog for Muscular Dystrophy UK🧡 Please get in touch if you're interested in supporting the development of our new infrastructure to improve quality of data for research! 🧬💻🥼

Are you living with a #RareDisease? Take the Genetic Alliance UK Rare Barometer survey and let your voice be heard! 🗣️ sphinxonline.com/surveyserver/s…

🔍 Your expertise can make a difference in paediatric palliative care! 🌟 Participate in the #PALLIAKID survey and share your insights to improve the well-being of children with life-limiting illnesses across Europe. ⏳ It only takes 20 minutes: shorturl.at/FlodP

NHS community diagnostic centres speeding up access to tests, survey finds dlvr.it/TCSDr4

Huge funding boost for Newcastle University projects searching for 'life-changing' progress in muscular dystrophy care chroniclelive.co.uk/news/health/hu…

From the best apps & free online resources through to online personal trainers, our adaptive fitness research has shown us that no matter where you are in your fitness and life, exercise can be for everyone with the right adaptations. To read more visit: rarity-life.com

Huge congratulations to Stephen McGuire for winning a Boccia gold medal at the #Paralympics2024!! 🥇🥳👏🧑‍🦽Stephen lives with Muscular Dystrophy; read about his story and his journey to #Paris2024 at the Muscular Dystrophy UK link below...

📃#ICYMI our publication on disease-specific data is now available! Read our article to find out more about a plan of action focused on #collaboration and #standardisation 👇 mdpi.com/2306-5729/9/4/…

🔎 When looking for information about #rarediseases, we can encounter misleading data, people promoting #pseudotherapies, and all sorts of unreliable content. 🤔 How can we find trustworthy information? Rewatch our webinar on #pseudoscience 👇 youtu.be/kEwVZMOuWQw?si…

We asked what living with muscular dystrophy is like, and your responses were uplifting: 💬 "It's easier with the incredible support from Muscular Dystrophy UK." 💬 "Physio support makes a big difference." 💬 "It's tough at times but we... still find a reason to smile."

My lovely fella is doing his first ever sponsored run on Sunday fundraising for the fab Peter - not a 5k or 10k but a Great Run half marathon!! If you'd like to help him reach his final target pls visit his JustGiving page 🙏🏃‍♂️🏅‍💚🦁🧬 justgiving.com/page/nikki-mur…