Rare, genetic and undiagnosed conditions such as childhood liver 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. 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.
You can help to ensure those affected by rare, genetic and undiagnosed conditions get access to the right care and treatment. During this election campaign please write to your prospective parliamentary candidates and ask them to sign the pledges.
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 and medical research collaborations
Find out more at www.pledgeforpatients.org.uk or contact firstname.lastname@example.org.
Pledge for Patients is a campaign run by Genetic Alliance UK.