Rare Disease UK Annual Meeting

17 June 2018

As part of our RAIRDA work, our policy and public affairs team attended Rare Disease UK’s annual meeting held in Amnesty International UK’s London office on Wednesday 13 June. The meeting was an opportunity to hear about Rare Disease UK’s work in mental health and also a fantastic opportunity to meet with Rare Disease UK’s members ranging from academics, patients, patient organisations, clinicians, and other industry representatives.

The speakers included:

• Luke Pembroke, who is affected by severe haemophilia B

• Natasha Coates, elite disability gymnast living with mast cell activation syndrome

• Dr Jayne Spink, Chair of Rare Disease UK and CEO of Genetic Alliance UK

• Amy Hunter, Director of Research, Genetic Alliance UK and Rosa Spencer-Tansley, Research Officer, Genetic Alliance UK
  
  

The UK Strategy for Rare Diseases, along with the results of Rare Disease UK’s report on mental health in rare disease patients, and the experiences of children and young people affected by rare conditions were discussed.