About Genetic Alliance UK

Genetic Alliance UK logoWe are delighted to welcome Genetic Alliance UK, as the new source for our Rare Disease, Genetic and Undiagnosed columns from 2015.

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. It is an alliance of over 180 patient organisations – including SNJ. Genetic Alliance UK has two long-running initiatives; Rare Disease UK and SWAN UK.

SNJ founder & CEO, Tania Tirraoro, is also a Trustee of GAUK.

Rare Disease UK is a campaign to implement the UK Strategy for Rare Diseases and works with national bodies and patient groups on improving the lives of people living with rare conditions in the UK.

SWAN (Syndromes Without a Name) UK is an initiative supporting families with children who have undiagnosed conditions. They have a lively membership and a great community spirit!

Genetic Alliance UK has been instrumental in forming a new All Party Parliamentary Group (APPG) on Rare Disease in the Houses of Parliament.

There will be a range of writers of our Genetic Alliance UK column, depending on the story.[/su_column]

 

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