Rare Disease Day 2017 ‘We’ve come a long way – but there’s more to do’

  This year’s Rare Disease Day focus is research. Today, February 28, patient organisations are busy highlighting so much of the fantastic research currently being undertaken to better understand a whole range of rare diseases. We are using this spotlight to share the work of some of those undertaking research into TSC. The

Survey on disability and housing

The Equality and Human Rights Commission (EHRC) want to hear directly from disabled people and relevant organisations in England, Scotland and Wales to help them to understand whether the availability of accessible and adaptable housing and the support services around it fulfils disabled people’s rights

Campaign call to write to your MP to challenge unfair access to medicine and care for people with Rare Diseases – ahead of a Westminster debate.

Recently, the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions published a report which showed that the UK Strategy for Rare Diseases is not being implemented effectively in England. You can read the full report online on the Rare Disease UK website. The