Latest news

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Final Draft Guidance Recommends Asfotase alfa (Strensiq) for use for the treatment of Paediatric-onset HPP

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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?

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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.

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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?

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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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