Metabolic Support

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

[Metabolic Support @MetabSupport]

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: https://t.co/aHqC0g2vOP

[Metabolic Support @MetabSupport]

#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! 👇

[Metabolic Support @MetabSupport]

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: https://t.co/cJrT76e53h

[Metabolic Support @MetabSupport]

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: https://t.co/ClEauanyDc

[HCU Network America @HCUAmerica]

💙 October is HCU Awareness Month and we’re bringing the community together! 💙

Join us for a Virtual Meet Up IN ONE WEEK on Sunday, October 12 at 4 PM CT / 5 PM ET / 3 PM MT.

📲 click here to register: https://t.co/VYP5bxATqi

#HCUAwareness #GoBlueForHCU #HCUCommunity

[Metabolic Support @MetabSupport]

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: https://t.co/Yx3llC66NL

[Metabolic Support @MetabSupport]

👉 Check out our Monthly Medicines Roundup for September: https://t.co/khSw6czyoz

📧 Email me what you'd like to see on our website: [email protected]

[Genetic Alliance UK @GeneticAll_UK]

Are you impacted by genetic conditions? Join online and share your views on new tests and treatments for genetic conditions during pregnancy. Organised by
@GOSHCharity and @UCLchildhealth
Find out more at https://t.co/kwFFpt3XJT

[Metabolic Support @MetabSupport]

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!

[Metabolic Support @MetabSupport]

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: https://t.co/22An0tf6ke

[Metabolic Support @MetabSupport]

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: https://t.co/icNqDUTfbH

[Metabolic Support @MetabSupport]

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!

[Metabolic Support @MetabSupport]

Only two months to go until #CC25! 🎉

Check out this video from Sarah, our Community Lead, on what to expect, and get your FREE tickets by clicking the following link:

https://t.co/0rQQLfuKXo 🎟️

[Metabolic Support @MetabSupport]

💡 Think Ammonia. Test Earlier. Save Lives.

Hear from Sophie, mum to Rory who experienced dangerously high ammonia as a result of his IMD, Argininosuccinic Aciduria (ASA).

👉 Read more about the Think Ammonia campaign in our one year report:
https://t.co/LXILQDj8RE

[Metabolic Support @MetabSupport]

@RareRevolutionM Thank you for sharing 👏👏👏

[RARE Revolution Magazine® @RareRevolutionM]

Metabolic Support UK's (@weareMSUK) #ThinkAmmonia year one report is now LIVE!

The campaign aims to save lives through earlier and accurate ammonia testing.

Read the report at https://t.co/N0Kul8h0IL

[Metabolic Support @MetabSupport]

🔥 @RareBeacon are hosting a one-day business planning workshop for rare disease patient groups & charities!

📅 23 Oct, 10:00–16:30 BST.
📍 Notre Dame London

🎯 Leave with a draft plan + practical advice tailored to your goals.

Register now 👇
https://t.co/KZYgYvzYQV

[Metabolic Support @MetabSupport]

The #ThinkAmmonia campaign was inspired by too many stories like Rohan's.

Read our one year report which shares the progress made possible through collaboration and sets out the next steps to improve outcomes globally.

👉 Read it, now: https://t.co/LXILQDjGHc

[Metabolic Support @MetabSupport]

When IMDs can't necessarily be prevented, what does the NHS 10-year plan mean for the IMD community?

👉 Read more in our latest article: https://t.co/Mrp9rPk7cb

[Metabolic Support @MetabSupport]

Just one week until the launch of our "Think Ammonia: Year One Report". 🎉

Want it directly to your inbox? Sign up to our mailing list: https://t.co/BVeb8FKLST