The TSA is pleased to announce its official support for Rare Disease UK’s Rare Reality campaign, which has been launched in the run-up to Rare Disease Day 2019 on 28 February.
Rare Reality aims to illustrate the experiences of people with rare diseases and those who care for them, offering an important opportunity for the TSC community to highlight the impact that TSC can have on lives. People affected by a rare disease can share their experiences of a rare disease by adding a Rare Star to the Rare Disease Constellation, available through the Rare Disease UK website here.
Rare Disease UK is working with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support. Rare Disease UK is a campaign ran by Genetic Alliance UK, a national charity of more than 200 patient organisations who support those affected by a rare condition.
Genetic Alliance UK are also hosting a series of receptions in honour of Rare Disease Day and are calling on everyone affected by a rare disease to write to their MP in support of their Rare Disease Day Report, which asks for the UK strategy on rare diseases to be updated. More information can be found on their website.