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.

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Your Monthly Medicines Roundup for June 2024

1st June 2024

Interested in the reading our Monthly Medicines Roundups for June?

Click the button below to find out more:

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Your Monthly Medicines Roundup for May 2024

30th May 2024

Interested in the reading our Monthly Medicines Roundups so far?

Click the button below to find out more:

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Rhiannon: My experience of volunteering at MSUK

24th May 2024

Ever wondered what volunteering for MSUK is like?

Click the button below to find out more:

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Your Monthly Medicines Roundup for April 2024

1st May 2024

Interested in the latest medicines developments for April?

Click the button below to find out more:

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Your Monthly Medicines Roundup for March 2024

1st April 2024

Interested in the latest medicines developments for March?

Click the button below to find out more:

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Great news for Tyrosinaemia Type One

15th March 2024

English government endorses recommendation to screen newborns for tyrosinaemia type one.

Click the button below to find out more:

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Your Monthly Medicines Roundup for February 2024

1st March 2024

It has been a quiet month in terms of public announcements for newly approved metabolic medicines. That does not mean that we have been waiting quietly for March to roll in. For many newly approved metabolic medicines, we work with AWSMG, Health NI, NICE and SMC for several months, sometimes years, in the lead up to the approval. 

Click the button below to find out more:

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Read Amy Steele's Student Voice Prize Essay

6th February 2024

Amy is a second year medical student at The University of Manchester. Prior to this she completed a BSc in Bioscience, specialising in molecular biology and genetics, at Durham University, which sparked her interest in genetic diseases.

Read Amy’s essay which discusses the issues faced by people living with rare diseases, and how lack of adequate information, services and management can negatively impact people in their daily life. This essay is written through the lens of ornithine transcarbamylase deficiency (OTD).

Click the button below to read Amy’s essay:

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Your Monthly Medicines Roundup for January 2024

1st February 2024

Well, January’s flown hasn’t it? This has been a busy month for medicines and two medicines were approved for the treatment of some inherited metabolic disorders (IMDs).

Click the button below to  find a round-up of these medicines, alphabetised by disorder name:

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Our "Think Ammonia!" campaign

3rd January 2024

The “Think Ammonia!” campaign from Metabolic Support UK aims to improve outcomes for individuals experiencing hyperammonaemia.

Click the button below to visit the “Think Ammonia!” campaign page:

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Need information on managing leukodystrophy in employment?

11th December 2023

Alex TLC  have put together a resource with information that may help you and have shared recorded presentations from Tony Stevens (Head of Development at Disability Rights UK) and Michael Conway (A community member that works for BAE systems and lives with Adrenoleukodystrophy).

Click the button below to visit the Alex TLC information page:

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We're supporting the Adult Rare Disease Bone Network

8th December 2023

Over the past few months, we’ve been working to support the launch of the Adult Rare Disease Bone network. This network aims to improve the lives of adults living with rare bone diseases.

Click the button below to read more about the network, to access support for your rare bone disease or to watch videos from the member organisations:

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Excipients in pharmaceutical products

7th December 2023

Medicines contain active ingredients to treat or cure a disorder. They also contain other ingredients. These are called excipients and are used for a variety of different reasons from improving the taste and texture to helping them dissolve better, work better and last longer as well as making them easier to handle.

Excipients are reviewed by healthcare regulatory agencies to ensure they are generally safe for use in human medicine; however, some patients may want to avoid certain excipients for a variety of reasons

Click the button below to read the full statement:

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<p>In the centre of the image is the Thoughts into Action cover which says "Thoughts into Action" and has a caption reading "What is quality of life as defined by people living with inherited metabolic disorders?". </p>
<p>The cover also has pale pink and white wavy graphics and an image of three people in the bottom left corner, a man with tattoos, a lady in a wheelchair and a man in a purple t-shirt.

What does the Autumn Statement mean for people living with Inherited Metabolic Disorders?

29th November 2023

Interested in the government’s Autumn Statement but can’t make heads or tails of it? We’ve taken a look and have broken down the key points for people living with inherited metabolic disorders.

 

Interested in reading more? Click the button below:

The background is a pale blue overlayed with a white net. </p>
<p>In the centre of the image is the Thoughts into Action cover which says "Thoughts into Action" and has a caption reading "What is quality of life as defined by people living with inherited metabolic disorders?". </p>
<p>The cover also has pale pink and white wavy graphics and an image of three people in the bottom left corner, a man with tattoos, a lady in a wheelchair and a man in a purple t-shirt.

Read our Thoughts into Action report

25th September 2023

We’ve released our Thoughts into Action report which was informed by research into identifying what good quality of life is for our communities, using a methodology that allowed our communities to speak, on their own terms, and for their stories to be meaningfully used to affect direct change.

 

Interested in reading our report? Click the button 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:

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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:

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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:

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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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