Youth Advisory Board

At SRUK we want to ensure that everyone affected by the condition has access to the information and support they need.

When establishing SRUK we identified a gap in the support provision available to young people diagnosed with scleroderma. Due to this, the Youth Advisory Board (YAB) has been established.

On the Board sits 7 young people affected by Raynaud's and Scleroderma, alongside 2 carers (a partner and a mother).

The Board's first meeting was to discuss the current challenges and prioritise work items to focus on over the coming years. The priorities are:

  1. Well being – building confidence to communicate and manage their condition
  2. Education – increase awareness and understanding in schools
  3. Understanding a chronic condition – information for young people and their families
  4. Self management – enhancing knowledge on practical home management
  5. Health care – improving the transition between paediatric to adult services
  6. Housing – information on support available and rights
  7. Employment – getting into work, rights at work and coping in employment

The YAB will be tackling each priority with SRUK to establish how we can improve the situation for young people and improve lives.

If you are interested in supporting our youth work please contact

To keep up to date with the work of our YAB, follow us on Instagram.

If you are a young person looking to find support and friendship then please join our closed Facebook group.