Metabolic Support

Metabolic Support The leading patient organisation for inherited metabolic disorders offering support to the 1.43M+ people affected worldwide to live well today, tomorrow

Our social media channels are designed as a way to share our work and to engage with the inherited metabolic community and beyond. Although we welcome healthy debate and feedback we will remove posts or comments that we feel are not in line with our projects, campaigns or organisational aims. Self-promotion, spam and irrelevant links aren't allowed nor is tagging people unknown to you in comments on our work.

Gene therapy for babies is here, and it’s growing within Inherited Metabolic Disorders (IMDs).Gene therapy is a medical ...
26/06/2026

Gene therapy for babies is here, and it’s growing within Inherited Metabolic Disorders (IMDs).

Gene therapy is a medical approach that works by replacing or repairing faulty genes - giving the body the instructions it needs to function properly. For those living with Inherited Metabolic Disorders (IMDs), this science is already making a real difference, and it continues to move forward – this is positive news.
A new trial is now extending this progress to the youngest patients. The ornithine transcarbamylase (OTC).

OTC-HOPE trial is treating baby boys under 9 months old born with severe OTC deficiency. In newborn babies who have OTC, ammonia can build up in the blood to dangerous levels that, untreated, can be fatal. The trial delivers a single IV infusion carrying a working copy of the faulty gene directly to liver cells - and early results are promising: 5 out of 7 babies have had no dangerous ammonia crises since treatment.

Have you been following the OTC-HOPE trial? What are your thoughts? Drop a comment below

Find out more: https://otc-hope.com/

🚀 Fundraising Lead 🚀£45,000–£55,000 | Full Time | Remote with TravelAre you a fundraising whizz who can spot an income o...
23/06/2026

🚀 Fundraising Lead 🚀

£45,000–£55,000 | Full Time | Remote with Travel

Are you a fundraising whizz who can spot an income opportunity from a mile away?

We're looking for a proactive, relationship-building Fundraising Lead to help grow income, secure support from trusts, foundations, corporates and major donors, and drive our fundraising strategy forward.

You'll be confident writing winning bids, building lasting partnerships, and working independently while collaborating with a small, ambitious team.

Most importantly, you'll be helping improve the lives of people living with rare inherited metabolic disorders.

Sound like you? We'd love to hear from you. Take a look at the role on our website today!

https://metabolicsupport.org/get-involved/vacancies/

23/06/2026

A big thank you to everyone who joined our latest Brews & Views session! ☕

We'd love to hear your thoughts.

Have you already been through the transition period, or are you starting to think about it now? What was your experience like, and what advice would you give to others preparing for it?

Share your thoughts in the comments below 👇

If you missed the session or would like to watch it back, head over to the Brews & Views section of our website to catch the talk.

If you have any questions or would like to continue the conversation, please get in touch – we're always happy to help. 💜

https://movementforgood.com/draws/special/community... 💜 Click the link to nominate Metabolic Support today and help us ...
22/06/2026

https://movementforgood.com/draws/special/community...

💜 Click the link to nominate Metabolic Support today and help us be in with a chance of winning a £5,000 Community Grant!

It only takes 60 seconds, and your support would mean so much to us. Thank you for helping us continue our work.

💜

Join an upcoming webinar from Consilium Scientific exploring how putting lived experience at the heart of research can s...
16/06/2026

Join an upcoming webinar from Consilium Scientific exploring how putting lived experience at the heart of research can shape every stage of health and care studies.

Using the RareCare programme as an example, the session will explore how people with lived experience helped design and guide the research from the very beginning, including the development of a peer researcher programme that enabled community members to play an active role in the work.

Through practical examples and reflections from those directly involved, the webinar will discuss how this approach can strengthen representation, build trust, and create more meaningful impact across health and care research, well beyond the rare disease community.

Find out more and register here: https://mailchi.mp/consilium-scientific/0l5bmhcmfv

[This work is independent research funded by the National Institute for Health and Care Research (NIHR) (RareCare: Evaluation of England's Rare Diseases Action Plans, NIHR205983). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.]

☕ Brews & ViewsAre you a parent or carer with a child approaching transition age, or have you recently been through tran...
10/06/2026

☕ Brews & Views

Are you a parent or carer with a child approaching transition age, or have you recently been through transition?

Join us for an informal chat to share experiences, discuss concerns, and tell us what information and support would be most helpful for families.

Your views can help shape future support for others navigating transition.

📅 Wednesday 11th June

🕖 7:15pm – 8:00pm

🔗 Brews & Views Webpage:
https://buff.ly/UA5vQ8j

💻 Join the session:
https://teams.microsoft.com/meet/337814649835051

We'd love to see you there!

💜 What an incredible show of community spirit and generosity!A huge thank you to everyone who supported the 13th Annual ...
05/06/2026

💜 What an incredible show of community spirit and generosity!

A huge thank you to everyone who supported the 13th Annual Ladies Day at Beverley Rugby Club, helping to raise an amazing £2,051.25 for Metabolic Support.

Every donation, raffle ticket, auction bid, and act of kindness will help us continue supporting individuals and families affected by inherited metabolic disorders. We are so grateful to Fiona, Mike, Carol, Andy, the organising team, volunteers, and everyone who attended and contributed to making the day such a success.

Together, you are helping to raise awareness, provide support, and make a lasting difference.

Read Fiona and Mike’s full story from the day here:
https://buff.ly/X8sD86H

Feeling inspired to take on your own fundraising challenge? We'd love to hear from you – get in touch at [email protected].

Thank you for being part of something truly special. 💜

☕ Brews & Views Are you a parent or carer with a child approaching transition age, or have you recently been through tra...
02/06/2026

☕ Brews & Views

Are you a parent or carer with a child approaching transition age, or have you recently been through transition?

Join us for an informal chat to share experiences, discuss concerns, and tell us what information and support would be most helpful for families.

Your views can help shape future support for others navigating transition.

📅 Wednesday 11th June 7:15-8:00pm

Brews & Views Webpage:
https://buff.ly/UA5vQ8j
Link to Join:
https://teams.microsoft.com/meet/337814649835051?p=W02d1NPfbG5C3o4lld

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Metabolic Support UK, Centurion House, 129 Deansgate
Wrexham
M33WR

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