You may have heard of the Adult Rare Bone Disease Network, but what is it? 🤔 Slide along for a short description and visit the following link to find out more, see who’s involved, and learn how the network can benefit you: buff.ly/4dZIDJc #AdultRareBoneNetwork

Are you interested in clinical trials? 🤔 ClinicalTrials.Gov is a registry of clinical trials, and holds registrations from over 444,000 trials from 221 countries. Check out ClinicalTrials.Gov and others on our #ResearchReadyHub, here: buff.ly/4cnzysp

This is not a final decision. If you live with, or look after someone living with, ARG1d we need your help. 📢 Take part in our survey, share your views directly with NICE and pass it along! Find out more and share with others: buff.ly/4edhSRC #MSUK #IMDs #ARG1d #NICE

Last week, we shared details of the #AdultRareBoneNetwork, but what does it do? This network sets out to improve outcomes for adults living with rare bone diseases. Slide along to find out the aims and check out the website for more information: buff.ly/4dZIDJc

🎤 We're excited to announce Naomi Litchfield, previously a nurse at GOSH and now director at a CRO, will be speaking at our 2024 Community Conference. 🎟️ Join us on Sat 9th of November in Birmingham! Book your tickets now: buff.ly/3WHy6wm #MSUK #CC24 #Community #IMDs

🎤 We're excited to announce Sonam Gurung, postdoctoral researcher at GOSH focusing on developing new therapies for IMDs, will be speaking at our Community Conference. 🎟️ Join us Sat 9th of November in Birmingham! Book your tickets now: buff.ly/3WHy6wm #MSUK #CC24 #IMDs

Last month we released our e-modules on our IMD Education Centre which give insight into metabolic crises and how medicines are developed. Which topics would you like to see on our e-modules? Comment below 👇

Would you like to share your experiences or views of genetic testing? 🧬 We’re looking for people and families to speak with journalists. Sound like something you’d like to do? Drop us a message or email [email protected] to find out more and get involved 🙋 #MSUK

🎤 We're excited to announce Dr. Reena Sharma, consultant at The Mark Holland Metabolic Unit, Salford Royal Hospital, will be speaking at our Community Conference. 🎟️ Join us on Sat 9th of November in Birmingham! Book your tickets now: buff.ly/3WHy6wm #MSUK #CC24 #IMDs

Is it important to you that material about you or your loved one’s condition, from leaflets to websites, contains images of people that are affected by it? 📸 However you feel, let us know in our two-question survey: buff.ly/4d8jwDc This work is sponsored by Chiesi Ltd.

We've been selected as one of Sciensus' charity partners! Because of this, we travelled down to their office to find out about their processes and discussed how we can work together. Do you have questions about home care? Check out their resources: buff.ly/47t0vtS

🎤 We're excited to announce Dr. David Bick, Principal Clinician for the Newborn Genomes program at Genomics England, will be speaking at our Community Conference. 🎟️ Join us on Saturday 9th of Nov in Birmingham! Book your tickets now: buff.ly/3WHy6wm #MSUK #CC24 #IMDs

This is not a final decision! Learn more about the decision and get involved by clicking the following link: buff.ly/4gyD8D9

Introducing "Living Well"! 🌟 Treatment is vital but with 95% of rare conditions lacking treatments, we must focus on improving wider support such as access to schools, employment, relationships and joy! Learn more: buff.ly/3XAtNlE