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!

Click the button to read the more:

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:

Blue sky background overlayed with a graphic of a man with a beard looking at a large strand of double helix DNA with a maroon colour.

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:

Blue sky background overlayed with the Thoughts Into Action project logo which is the outline of a persons head with a lightbulb at the centre.

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:

Blue sky background overlayed with the Thoughts Into Action project logo which is the outline of a persons head with a lightbulb at the centre.

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.

Click the button below to learn more:

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

Click the button below to learn more:

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:

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