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 below.
If you are a prospective parliamentary candidate please add your name below to show your support.
Find out why these pledges are important to the rare, genetic and undiagnosed community here.
If I am elected, I will support patients and families affected by rare, genetic and undiagnosed conditions by working to:
– enhance access to appropriate care and treatment.
– improve the pathways to an accurate diagnosis.
– foster research and innovation to deliver new cures and treatments.
– ensure that Britain remains a key player in international health collaborations.