The leading patient organisation for inherited metabolic disorders supporting thousands of patients worldwide to live well today, tomorrow
Joined January 2022
- Tweets928
- Following401
- Followers402
- Likes350
Metabolic Support retweeted
💙 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: bit.ly/HCUmonthmeetup
#HCUAwareness #GoBlueForHCU #HCUCommunity
Metabolic Support retweeted
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 redcap.link/tbl4h8v6
Metabolic Support retweeted
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 bit.ly/3I21RUe
Metabolic Support retweeted
Are you impacted by genetic conditions? Attend a workshop in London or online organised by
@GOSHCharity and @UCLchildhealth and share your views on new tests and treatments for genetic conditions during pregnancy. Find out more at redcap.link/tbl4h8v6
Metabolic Support retweeted
#Dazzle4Rare2025 Metabolic Support UK helps raise awareness of rare conditions, like Inherited Metabolic Disorders. You can learn more about IMDs and what Metabolic Support UK do via the website:
metabolicsupportuk.org
@metabolicsupportuk #Dazzle4Rare
Metabolic Support retweeted
📅Save the Date! 18 Sept 17:00 CEST Join Think Ammonia! – Test & Diagnosis of Hyperammonaemia in Time
A crucial #webinar by @Metab_ERN & @weareMSUK
✨ Discover expert insights on recognizing, diagnosing, and treating high ammonia before it becomes critical
linkedin.com/posts/metab_ern…
Metabolic Support retweeted
Are you impacted by genetic conditions? Attend a workshop in London or online organised by @GOSHCharity and @UCLchildhealth and share your views on new tests and treatments for genetic conditions during pregnancy. Find out more at redcap.link/tbl4h8v6
Metabolic Support retweeted
🌟 Social Action in Action! 🌟
Y6s at Boston West have smashed their #PLPS Social Action Project: Billy’s Boulders – raising awareness for Metabolic Support UK through creative posters & painted boulders. 💙Take a look next time you visit the school!
@PLCommunities
Metabolic Support retweeted
Excellent #BIMDG2025 pre-meeting this evening with sessions on Fabry Disease and urea cycle disorders.
Heard from @weareMSUK about their #ThinkAmmonia campaign. Think ammonia, measure ammonia, act on the result (urgently!).
ALT Metabolic Support UK poster with photo of doctor and caption: Think ammonia! Test earlier! Save lives!
Metabolic Support retweeted
Clinical trials can feel overwhelming, but they don’t have to be.
Explore @weareMSUK Research Ready Hub to learn how research works + how to get involved: metabolicsupportuk.org/infor…
Learn about our OTC study: otcmrnastudy.com/en/
#OTCD #mRNATherapy #UCD #IMD #Arcturus
Metabolic Support retweeted
A growing movement, spearheaded by @weareMSUK is calling for a fundamental shift—one that prioritises quality of life and empowers the rare disease community to live well regardless of medical prognosis. Read here: bit.ly/RARE-Metabolic-Living…
Metabolic Support retweeted
The BBS & friends in the Rare Bone Alliance celebrated the launch of the NHS Rare Disease Collaborative Network for Adult Rare Bone. It was a successful day of networking and informative talks with reps from the 19 NHS Hospitals who have joined! Read more: shorturl.at/jzI28
Metabolic Support retweeted
Thrilled to see @weareMSUK poster on “Thought intoAction” for the IMD community at @orphan_drugs #WODC Europe 2023!
Metabolic Support retweeted
Dive into the psychosocial impact of inborn errors at the SSIEM Patient Advocacy Session on Aug 29, 9am-12pm. Learn from patient advocates, explore inspiring stories, and gain insights. Join us to make a difference! Learn more about #SSIEM2023 here: ssiem2023.org/
Metabolic Support retweeted
Following the launch of our stage one report assessing the need, usefulness & next steps for a rare patient passport, we’re launching phase 2!
We need 200 people living with a rare condition, or their caregiver, to trial a personalised passport bit.ly/Rare-passport
Metabolic Support retweeted
Our report on #CareCoordination is out TODAY!
We have worked with our members to demonstrate the value of care coordination and the impact of its absence. Thank you so much to everyone involved who shared their story.
You can read our report here – ow.ly/feT250N441F
Metabolic Support retweeted
HERE WE GO! 😍 You can now watch Lucy and Dan speaking to ITN in 'Together Caring for Rare Disease', a short film in collaboration with @ITNProductions, @GeneticAll_UK and @MedscapeUK ! 🤍 Enjoy! #ShowYourStripes link below!
m4rd.org/2023/02/28/rare-dis…
Metabolic Support retweeted
Tomorrow!! @RoySocMed 🦓 remember to bring your stripy socks to get snapped for our #showyourstripes gallery!! See you there!
Metabolic Support retweeted
Not sure if you should apply to be a #Mentee on this year's programme?
Former mentee @NinaKnight8 of @acrodysostosis has the words of encouragement you need to submit that application!
youtube.com/watch?v=Hfx0HyqY…
Metabolic Support retweeted
What happens when a baby gets a positive heel prick test in the first week of life? How would you cope with your child's diagnosis? Navigating my #PKU journey. Please SHARE to help #RaiseAwareness of a challenging and commonly misunderstood rare condition
youtube.com/watch?v=KX9xvZgZ…
