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.