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What is the UK Strategy for Rare Diseases?
Where can I find information and support for my condition?
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Latest from Rare Disease UK

Publication of the new UK Rare Diseases Framework

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Publication of the new UK Rare Diseases Framework

Our thoughts on the UK Rare Diseases Framework

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Rare Reach Festival 2021

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Rare Reach Festival 2021

Star in the Rare Disease Day 2021 video!

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Star in the Rare Disease Day 2021 video!
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We are the national campaign for people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

Anyone with an interest in rare diseases can become a supporter of Rare Disease UK. It is completely free to join for everyone other than industry.

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Our Work

We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support. We work with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.

View more work

Alert Card Report (2020)

Our Work

Alert Card Report (2020)

Rare Disease Day 2019

Our Work

Rare Disease Day 2019

Illuminating the rare reality (2019)

Our Work

Illuminating the rare reality (2019)

Living with a rare condition: the effect on mental health (2018)

Our Work

Living with a rare condition: the effect on mental health (2018)

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Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions :

  • Westminster APPG
  • Scottish CPG
  • Welsh CPG

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© Genetic Alliance UK 2018

Rare Disease UK is a campaign of Genetic Alliance UK.

 

Genetic Alliance UK registered charity numbers: 1114195 & SC039299.
Registered company number: 05772999