Metabolic Support (@MetabSupport) header
Metabolic Support (@MetabSupport) profile picture

Metabolic Support

@MetabSupport

The leading patient organisation for inherited metabolic disorders supporting thousands of patients worldwide to live well today, tomorrow

metabolicsupportuk.org
Joined January 2022
  • Tweets928
  • Following401
  • Followers402
The DfE’s national SEND conversation is live ahead of the Schools White Paper. Some online sessions are still open to hear what’s working, what isn’t, and what real reform should look like. Join a virtual event and share your views: gov.uk/government/news/gover…
People taking part in a group discussion around a table, with text announcing the UK government’s national conversation on SEND.

ALT People taking part in a group discussion around a table, with text announcing the UK government’s national conversation on SEND.

71
#CC25 was incredible! 🎉 Huge thanks to the 100+ people who attended to create a day of connection and learning with a wide range of talks and breakout sessions on #HFI, #HCU and a meeting of the Adult Rare Bone Disease Network. Where you there? Share your highlights! 👇
1
1
99
Major milestone for the cystinosis community in Scotland! 🎉 SMC has accepted Procysbi for use within NHSScotland, following years of advocacy by Metabolic Support UK, @CystinosisUK & @Kidney_Research . 👉 Read more: shorturl.at/YlAEr
Lesley, Beki and Peter Greene, founders of Metabolic Support UK smiling. Beki is holding a medal and wearing an MSUK branded running vest. The text highlights the SMC approval for a cystinosis treatment.

ALT Lesley, Beki and Peter Greene, founders of Metabolic Support UK smiling. Beki is holding a medal and wearing an MSUK branded running vest. The text highlights the SMC approval for a cystinosis treatment.

1
1
340
Today is #WorldMentalHealthDay 📷 In 2021, nearly 1 in every 7 people experienced mental health issues. Living with an IMD can bring with it challenges that can affect our mental health but you are not alone. Access our A-Z of mental health orgs: shorturl.at/Ayy8I
Purple graphic with text reading: You are not alone, click the link below for an A-Z of mental health organisations. A graphic of a head representing mental health is shown.

ALT Purple graphic with text reading: You are not alone, click the link below for an A-Z of mental health organisations. A graphic of a head representing mental health is shown.

1
1
76
Throwback to #CC24! 🎉 Just over a month to go until our annual community conference. Tickets are flying, and we’ve even had to move to a bigger room to fit everyone in! 👉 Kick off your weekend right and grab your FREE tickets now: shorturl.at/fmoLj
Community member smiling stood next to our large A0 poster sharing the results of our hyperammonaemia survey.

ALT Community member smiling stood next to our large A0 poster sharing the results of our hyperammonaemia survey.

Man and two boys smiling while doing arts and crafts at a table.

ALT Man and two boys smiling while doing arts and crafts at a table.

Two trustees, Carl & Paul smiling for a posed photo.

ALT Two trustees, Carl & Paul smiling for a posed photo.

Small handmade playdough zebra figure decorated with googly eyes and colourful playdough

ALT Small handmade playdough zebra figure decorated with googly eyes and colourful playdough

1
1
62
👉 Check out our Monthly Medicines Roundup for September: metabolicsupportuk.org/news-… 📧 Email me what you'd like to see on our website: jonathan@metabolicsupportuk.org
31
Our fundraisers are incredible! Just look at all of these amazing people raising money to help us supporting people living with IMDs. 🎉 Are you planning a fundraiser? Get in touch, let us help you share your amazing work and celebrate your wins!
Image from Metabolic Support (@MetabSupport)
Image from Metabolic Support (@MetabSupport)
Image from Metabolic Support (@MetabSupport)
Image from Metabolic Support (@MetabSupport)
38
How do you prepare for a clinical trial? 🤔 Hear from Professor Paul Gissen and find out more on our Research Ready Hub. Interested? Check it out, here: buff.ly/NlRvS77
1
1
64
At 3, James fell dangerously ill with undiagnosed MCADD and slipped into a coma. He’s since overcome huge challenges, body image, mental health & bullying, and proves MCADD “cannot hold you back.” 👉 Read his inspiring story: buff.ly/0iXozi3
Young man standing on grass wearing a navy hoodie and light trousers. Text on the image reads: “MCADD cannot hold you back, only you can do that.” Below it says: “James Ford who lives with MCADD.” The Metabolic Support UK logo appears in the top right corner.

ALT Young man standing on grass wearing a navy hoodie and light trousers. Text on the image reads: “MCADD cannot hold you back, only you can do that.” Below it says: “James Ford who lives with MCADD.” The Metabolic Support UK logo appears in the top right corner.

1
2
285
Our CEO, Kirsty, and Information and Advice Officer Ellen are at the IMD Metabolic Study Day hosted by Birmingham Women's and Children's Hospital. Here, they're meeting experts and attending interesting lectures. Keep your eyes peeled for a video from their day!
Ellen and Kirsty stood in a hospital corridor smiling at the camera.

ALT Ellen and Kirsty stood in a hospital corridor smiling at the camera.

Large screen in a lecture theatre with a slide on encephalopathy.

ALT Large screen in a lecture theatre with a slide on encephalopathy.

1
71
Load more