Latest news
We're working hard to help our IMD communities
Metabolic Support UK has a long history of helping those affected with Inherited Metabolic Disorders (IMDs) and we continue to work hard to improve the lives of those affected and their wider community.
Interested in the latest on what we’re working on? Read our articles below.
The importance of hyperammonaemia awareness
14th September 2023
We’re supporting measures to prevent hyperammonaemia following the death of Rohan Godhania, who died as a result of consuming a protein shake whilst living with undiagnosed ornithine transcarbamylase (OTC) deficiency.
Click the button to read the more:
Meet Megan: Spotlight on the University of Essex
1st September 2023
Megan Fryer-Kelsey, a previous placement student has been featured in a national campaign highlighting the value of university!
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We're calling for action to prevent hyperammonaemia
30th August 2023
We were contacted by Food Navigator Europe to comment on how to prevent deaths due to hyperammonaemia.
Click the button to read the article:
Genetic Testing and Insurance
23rd August 2023
The Association of British Insurers (ABI) have recently updated their consumer guide on the code for genetic testing and insurance.
Click the button to see what this means and how the code can help you:
Mental Health Matters: The Unseen Issue in Metabolics
26th July 2023
Mental health often isn’t prioritised for people living with IMDs, this needs to change.
Click the button below for our statement on mental health:
We're working against ticket office closures.
25th July 2023
MSUK have signed a joint letter from Transport for All condemning the closure of train ticket offices.
Click the button below to learn more:
We've launched our Thoughts Into Action project.
5th April 2023
We’re aiming to find out what Quality of Life is as defined by our communities.
Click the button below to learn more and to get involved.
We've released Issue 11 of Metabolic Matters!
3rd April 2023
Read our first edition of the year which delves into the London Marathon, HPP and policy.
Click the button below to learn more:
Why make accessing essential benefits a burden?
29th March 2023
The Health and Disability White Paper was supposed to fix the “broken” benefits system.
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New treatment for rare inherited disorder
23rd March 2023
NICE final draft guidance recommends new treatment for primary hyperoxaluria type 1 (PH1)
Click the button below to learn more:
The Spring Budget and people living with IMDs
15th March 2023
Interested in the support offered as part of the UK Government’s Spring Budget?
Click the button below to learn more:
NBS Collaborative: New hope for newborn screening
1st March 2023
We’re working towards a future in which more rare conditions are screened for in newborn screening
Click the button below to learn more:
The Cost of Living with an Inherited Metabolic Disorder
28th February 2023
Read how the current economic climate is affecting our communities in our new report.
Click the button below to learn more:
Tyrosinaemia Type One Recomended for Screening
2nd February 2023
The UK NSC has recommended that TYR1 should be added to the UK newborn screening panel
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A momentous milestone for people living with HPP
1st February 2023
Final Draft Guidance Recommends Asfotase alfa (Strensiq) for use for the treatment of Paediatric-onset HPP
Click the button below to learn more:
The England Rare Disease Action Plan
19th January 2023
Back in 2022 we launched our England Rare Disease Explainer series highlighting the priorities and actions of this plan, want to revisit them?
Click the button below to learn more:
Social Tariff for Energy Bills
17th January 2023
MSUK, along with 95 charities and patient organisations are calling upon the Chancellor of the Exchequer to introduce discounted energy bills for low-income households.
Click the button below to read more:
The Scotland Rare Disease Action Plan
12th January 2023
Interested in learning about The Scotland Rare Disease Action Plan that was launched on the 19th December 2022?
Click the button below to learn more:
The true cost of living..
12th January 2022
We recently shared our Cost-of-Living survey which aimed to understand the effects of the current economic climate on our communities.
Click the button below to read what we found about specialised diets:
The Autumn Statement and You
22nd November 2022
100% of the IMD community members we asked have been affected by the cost-of-living crisis and the cost of energy was the biggest concern.
Click the button below to read The Autumn Statement and You:
