Metabolic Support

Metabolic Support The leading patient organisation for inherited metabolic disorders supporting thousands of patients 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.

☕ 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
Sign up here:
https://buff.ly/L0KS9GW

22/05/2026

A massive thank you to Emily, who ran the London Marathon for Metabolic Support UK this year and raised an incredible £2,110! 💜 🏃‍♀️

She had her girls there supporting her on the day with some amazing signs, making it even more special.

We rely on amazing supporters like Emily to help us continue the work we do for those living with Inherited Metabolic Disorders.

Feeling inspired? Get in touch to find out how you could fundraise for us!
📧 [email protected]

Get your FREE tickets to our 2026 Community Conference! Taking place on Saturday 14th November at The Studio, Birmingham...
21/05/2026

Get your FREE tickets to our 2026 Community Conference! Taking place on Saturday 14th November at The Studio, Birmingham.

Join us for a day of connection, learning and community. Meet other families living with IMDs, build friendships, share experiences and hear from others who understand the journey.

We’d love to see you there! 💜

Book your free place today: https://www.eventbrite.co.uk/e/metabolic-supports-2026-annual-community-conference-tickets-1982670615182?aff=erelexpmlt

This event is sponsored by: iECURE, Immedica, PTC Therapeutics, Sobi, and Ultragenyx.

Aiza's Story: Molybdenum Cofactor Deficiency (MoCD) ✨A name filled with light.A story that refuses to fade. Written thro...
20/05/2026

Aiza's Story: Molybdenum Cofactor Deficiency (MoCD) ✨

A name filled with light.
A story that refuses to fade.

Written through the eyes of a devoted father, AIZA is a deeply emotional memoir filled with treasured memories, quiet moments, laughter, growth, and the unbreakable bond between a father and daughter.

Some stories are written to entertain. Others are written to heal. This one was written from the heart because it needed to be.

Within these pages are fragments of conversations, moments of joy, and reflections so powerful they stay with you long after the final page.

AIZA is not just a memoir. It is a feeling. A presence. A reminder that love never truly leaves us. 💜

Visit our website to read more about Aiza’s story and find the link to purchase your copy today:
https://buff.ly/aftGh1L

19/05/2026

Our fourth Brews & Views session focused on what it really means to be Research Ready and how to confidently take part in clinical research.

A huge thank you to everyone who joined us. Together, we explored our Research Ready Hub and how it can empower people to better understand the research process, ask informed questions, and feel confident making decisions about participation.

You can now watch the full talk on our website.
https://buff.ly/0a2EMUL

Did you know that 18th May is World Homocystinuria Day?Help us spread awareness of homocystinuria and support the rare d...
18/05/2026

Did you know that 18th May is World Homocystinuria Day?

Help us spread awareness of homocystinuria and support the rare disease community by sharing this post 💜

Together, we can help more people understand the importance of early diagnosis, treatment, and support.

14/05/2026

Listen to Helen talking about anticipatory grief — such a difficult and emotional topic, but one that she approaches with incredible compassion and understanding. Many of you who have received support from Helen before will know just how amazing she is at what she does.

We also invite you to explore the new pages on our website covering grief, bereavement, death, and dying.

We hope these resources can provide comfort, support, and guidance to anyone who may need them 💜

👉 You can visit our new pages and resources here: https://buff.ly/U7Z1qg2

What does it mean to be research ready?Join us tomorrow to find out more! We’ll be talking all about research readiness,...
13/05/2026

What does it mean to be research ready?

Join us tomorrow to find out more! We’ll be talking all about research readiness, answering your questions, and sharing how you can become more involved.

We’re looking forward to meeting you and having a chat!

Brews & Views Webpage:
https://buff.ly/UA5vQ8j
Sign up here:
https://buff.ly/L0KS9GW

Do you have a rare or undiagnosed condition? Or are you a parent or carer of someone who does?The CONCORD2 (run by the D...
13/05/2026

Do you have a rare or undiagnosed condition? Or are you a parent or carer of someone who does?

The CONCORD2 (run by the Department for Health and Social Care) study wants to hear about your experience of care coordination — and your insights could directly shape future NHS recommendations.

The survey looks at how care is coordinated for people with rare conditions, and the real costs and benefits to patients and families. It's anonymous, takes around 30 minutes, and every response makes a difference.

There are two links depending on your situation:

🔗 I have a rare or undiagnosed condition (https://cambridge.eu.qualtrics.com/jfe/form/SV_09EGCdSmaBU4RTM)

🔗 I'm a parent or carer (https://cambridge.eu.qualtrics.com/jfe/form/SV_d6akhFMox1Udh4i)

⏳ Open until 29 May — share with anyone who might want to take part!

Address

Metabolic Support UK, Centurion House, 129 Deansgate
Wrexham
M33WR

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