Genetic Alliance UK is an umbrella organisation that represents over 190 patient groups, collaborating with over 2,000 stakeholders interested in genetic and rare diseases, and directly supporting over 1,500 families across the UK affected by undiagnosed conditions.
There are over 6000 known rare conditions that will affect 3.5 million people in the UK at some point in their life, and an estimated 6000 children born every year with undiagnosed genetic conditions. Our aim is to ensure that high-quality services, information and support are provided to all who need them. We actively support research and innovation across the field of genetic medicine.
We work on a variety of issues that families and individuals with rare, genetic and undiagnosed conditions in the UK face. These include reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and education.
We also carry out a number of activities to bring together and empower our community, they include:
– Holding events to raise awareness of rare, genetic and undiagnosed conditions and bring together isolated patients and families.
– Undertaking research to understand the challenges faced by families and patients.
– Bringing the voice of patients directly to policy makers.
Dr Jayne Spink, CEO of Genetic Alliance UK said:
‘We are delighted to have been selected as beneficiaries of this year's PM Society Awards. It is such an honour to have our work supporting patients and families affected by genetic conditions recognised in this way. We can’t thank you enough.’
You can find out more about the work of Genetic Alliance UK and donate here.