In the UK, 1 in 17 people will be affected by a rare disease at some point in their lives: this amounts to 3.5 million people.
Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many conditions are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives. Three quarters of all rare diseases affect children, and we estimate that rare diseases are responsible for about a third of infant mortality in the UK (Action for Access, 2019). Often, these conditions are inherited and can affect multiple family members.
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, encounter obstacles in gaining access to medicines, 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.
Ahead of the General Election on 12 December 2019, Genetic Alliance UK is launching Pledge for Patients, a campaign to help ensure that prospective MPs will support patients and families affected by rare, genetic and undiagnosed conditions once in office.
With the support of new MPs, and the support of our existing advocates in both Houses, we will seek to increase awareness of rare, genetic and undiagnosed conditions in Parliament, foster links between patients and their MPs, and ensuring patients and families affected by these conditions have access to appropriate care and support.
We are asking our members and supporters of our initiatives Rare Disease UK and SWAN UK to contact their local prospective parliamentary candidates to encourage them to sign the Pledge for Patients below.
If I am elected, I will support patients and families affected by rare, genetic and undiagnosed conditions by working to:
Fix the problems preventing or delaying UK patients having NHS access to rare disease medicines, treatments and care
Make sure the NHS is detecting people affected by rare, genetic and undiagnosed conditions as early as possible
Build on the UK Strategy for Rare Diseases, to ensure the UK remains a world leader in research and innovation