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Final Draft Guidance Recommends Asfotase alfa (Strensiq) for use for the treatment of Paediatric-onset HPP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