Author: Genetic Alliance UK

We are the national charity working to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions. We are an alliance of over 200 patient organisations. We are home to Rare Disease UK – the national campaign for people with rare diseases and all who support them – and SWAN UK (syndromes without a name), the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK.

Rare Disease, special needs

Green light urgently needed for #RareDisease Red Alert system

By Genetic Alliance UK February 29, 2020 February 18, 2020

SNJ note: It’s #RareDiseaseDay around the world. Today, CEO of Genetic Alliance UK, Jayne Spink, talks about a new “red alert” system that can help thousands of people. But it …

Columnists, Rare Disease, SEND & Health Research, special needs

Rare disease research is vital to patients. Now let’s use it to improve services.

By Genetic Alliance UK February 28, 2017 February 27, 2017

Rosie Collington of Rare Disease UK writes… The UK has a reputation internationally as a leader in rare disease research. Over the past few months at Rare Disease UK, we’ve …