We work on a variety of issues faced by families and individuals with genetic conditions. We aim to provide information, support families and influence the services needed by these patients. We also bring the patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education
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We are an alliance of over 200 patient organisations. We work with our members on campaigns, consultations and engagement projects to ensure our work accurately reflects the needs and concerns of patients and families affected by all types of genetic conditions.
Our mission is to ensure that high quality services, information and support are provided to all. We actively support research and innovation across the field of genetic medicine.
All our members
