Genetic Alliance UK

Genetic Alliance UK

Genetic Alliance UK is the national charity of over 150 patient organisations supporting all those affected by genetic conditions. Its aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them, Many genetic conditions are life long and progressive with high unmet needs, meaning often there are no effective cures or therapeutic interventions to arrest progression of the condition. Through its multi stakeholder campaign group Rare Diseases UK, Genetic Alliance UK calls for better research, understanding, diagnosis, treatment and management for the estimated 3.5 million people affected by rare diseases living in the UK. It has published authoritatively about the requirements of a national plan for rare diseases, and also surveyed the experiences of nearly 600 families with rare diseases across the UK.

 

Genetic Alliance UK has a strong network of partners across Europe through its work as an active member of the Patients Network for Medical Research and Health - EGAN, a network of European alliances and disease specific patient organisations with a special interest in genetics, genomics, and biotechnology. It also works closely with EURORDIS - a non-governmental patient-driven alliance of patient organisations representing 544 rare disease patient organisations in 49 countries. Eurordis is the voice of 30 million people affected by rare diseases throughout Europe.

 

www.geneticalliance.org.uk