Latest news
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NICE final draft guidance recommends new treatment for primary hyperoxaluria type 1 (PH1)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
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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.
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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Final Draft Guidance Recommends Asfotase alfa (Strensiq) for use for the treatment of Paediatric-onset HPP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:
