In the UK, 1 in 17 people will be affected by a rare disease at some point in their life: this amounts to approximately 3.5 million people.
Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives. Many of those affected will die prematurely. Often, these conditions are inherited and can affect more than one member of a family.
The vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. Patients and families frequently experience delays in gaining an accurate diagnosis for their or their loved one’s condition, and can struggle to access appropriate care and support.
Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions.
In order to ensure those affected by rare, genetic and undiagnosed conditions get access to the right care and treatment we need your help. Please write to your prospective parliamentary candidates and ask them to sign the pledges here.