#RareAPPG: Get MPs to support people living with rare, genetic and undiagnosed conditions
#RareAPPG is a campaign run by Genetic Alliance UK to enable people to easily find and get in touch with their MPs, asking them to register their interest in the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions so that parliamentarians will support people affected by these conditions. The campaign aims to increase awareness of rare conditions within parliament and therefore influence positive change for those individuals and families affected by rare conditions. You can read more information about the workings of the APPG here.
We are asking our members and supporters to contact their local parliamentary representatives to encourage them to pledge their support.
Collectively, rare conditions are not that rare with 3.5 million people in the UK being affected by the 6,000 currently identified rare conditions, which is equal to 1 in 17 people. Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Three quarters of all rare conditions affect children, and we estimate that rare conditions 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. However, on average it takes five years for someone with a rare condition to receive an accurate diagnosis and most rare conditions have no effective treatment.
Now is a pivotal moment for the rare, genetic and undiagnosed community with the release of the UK Rare Diseases Framework and the development of national action plans designed to improve experiences of people affected by these conditions.
It is therefore so important that parliamentarians are aware of the challenges faced by people living with rare conditions so they can represent their constituents effectively and influence change.
Please ask your MP to register interest in the APPG on rare, genetic and undiagnosed conditions using our email template. You can personalise it to add information about yourself.