Our Fundraising Lead, Soushian, is at the ABPI/ PMCPA Patient Organisation Forum today! 🎉 The event highlights partnerships between charities and pharma to improve care. Want to learn how treatments for IMDs are developed? Visit our Research Ready Hub 👉 shorturl.at/xl8sZ

🎉 It’s that time of year again. Our Annual Community Conference is back, and you're invited! Join us for a day of connection and learning at The Studio Birmingham on Saturday, November 15 from 10am - 4pm. 🎟️ Secure your FREE tickets now: shorturl.at/RsPiH

Read Tayyibah's Story 💜 Tayyibah lives with Argininosuccinic Aciduria (ASA). This story details her journey with ASA, from hospital stays, medications and a restricted diet to becoming an outgoing toddler who loves to explore. 👉 Check it out now: shorturl.at/sM72K

Join us for our annual community conference! 🤝 🎙️ Hear talks like: • Living Well with an IMD • Low Protein Cooking and IMDs • IMDs and Mental Health Plus much more! 🎟️ Reserve your tickets now: shorturl.at/RsPiH

Tomorrow, our CEO Kirsty Hoyle is speaking at the Patient Access to Medicines event in Scotland. Here, she'll be highlighting why community-led advocacy is vital in shaping better access to medicines, now and for the future. We’re proud to speak up for you! 💜

Clinical trials can feel overwhelming, but they don’t have to be. Explore Metabolic Support UK Research Ready Hub to learn how research works + how to get involved: metabolicsupportuk.org/information-an… Learn about our OTC study: otcmrnastudy.com/en/ #OTCD #mRNATherapy #UCD #IMD #Arcturus

Read Kyle's Story 💜 Kyle lives with Carnitine Palmitoyltransferase II (CPT II) Deficiency. Read his story, from misdiagnosis and uncertainty to finally getting answers and learning to manage this rare condition. 👉 Read it here: shorturl.at/AZS5T

Research Release 🔬 We're proud to share our latest insight report: "The Lived Experience of Arginase-1 Deficiency." 👉 Read the full report, here: shorturl.at/wiJw4

💜 Today we say goodbye to Toni Mees on her last day at Metabolic Support UK. Thank you, Toni, for your warmth and dedication to the IMD community. Wishing you all the best in your next chapter! 👇 Drop a message below to share your thanks.

💊 Your May Medicines Roundup is here! A quiet month overall, but there’s a positive update for Batten disease type 2. Updates for arginase-1 & molybdenum co-factor deficiency type A expected next month. 👉 Full update: buff.ly/YLNFrrL

The Multi-Dale Challenge, what an achievement! 🎉 A huge thank you to everyone who took part in the Multi-Dale Challenge on Saturday 10th May! Your incredible effort helped raise nearly £1,500 for Metabolic Support UK. 👉 Read more about the day: buff.ly/CllBVXH

Amazing advocacy from Bradford's Paediatric Metabolic Dietitians who are running local parkruns & selling samosas to raise funds for MSUK 💜 Join them at their next events: 📍14 June – Roberts Park (BD17 7LU) 📍13 Sept – Horton Park (BD7 3BN) Donate: shorturl.at/wMIGn

Would you jump out of a plane for us? 🪂 Jesy Woodman did, and raised over £1200 for MSUK! 🎉 Drop us a line at [email protected] with your fundraising ideas!

We’re thrilled to share that Jeans for Genes UK has awarded us a £5,000 grant to help support people living with IMDs. 💜 Providing grants isn't the only great work they do! Check out #JeansForGenes Week, 15–21 Sept: shorturl.at/M7PEO

📢 Have your say on the Government's Pathways to Work Green Paper. What could the proposed changes mean for people with inherited metabolic disorders? 👉 Read our article & respond to the survey to help shape our response to the proposed changes: shorturl.at/qeFHi

This time last year, we were at BIMDG. On Monday, we’re heading to Edinburgh for this year’s conference. We’ll be presenting on Think Ammonia, sharing posters on True Faces of Rare, and highlighting results from our hyperammonaemia survey. Going to be there? Come and say hi 👋

🧬 Help shape newborn screening in Scotland! Healthcare Improvement Scotland is inviting people with lived experience of rare disease to join a focus group on draft quality standards. 🗓 Runs during the 6-week consultation from 1 July. 📧 Email [email protected] to register!

Excellent #BIMDG2025 pre-meeting this evening with sessions on Fabry Disease and urea cycle disorders. Heard from Metabolic Support UK about their #ThinkAmmonia campaign. Think ammonia, measure ammonia, act on the result (urgently!).