Ahead of the General Election in 2015, and the Welsh Assembly and Scottish Parliament elections in 2016, we launched Pledge for Patients, a campaign to help ensure that those who were elected would support patients and families affected by rare, genetic and undiagnosed conditions once in office.
As part of the campaign, we provided our supporters with a “toolkit” and letter template for contacting candidates running for their constituency seat with information about rare, genetic and undiagnosed conditions:
“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.”
Candidates were encouraged to sign up to the ‘Pledge for Patients’ online:
The campaign saw a total of 351 candidates pledging their support for patients and families affected by rare, genetic and undiagnosed conditions:
The efforts of patients and families to raise awareness about the impact of living with a rare disease and the importance of cross-party support for those affected among prospective parliamentarians enabled Rare Disease UK to develop important relationships with elected representatives following the elections. This lead to the establishment of the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions in February 2016, and has directly influenced efforts to establish Cross-Party Groups on Rare, Genetic and Undiagnosed Conditions in the Welsh Assembly and Scottish Parliament.