New Educational Resources to Support People Living with Rare Conditions

NHS Education for Scotland (NES), has launched a series of educational resources aimed at supporting both people living with rare conditions and the health and social care professionals who care for them.

The initiative, led by Dr Martina Rodie and Dr Ruth McGowan on behalf of the Rare Disease Implementation Board, highlights the challenges faced by individuals affected by rare conditions, which collectively impact nearly one in 17 people in Scotland—around half a million people.

With over 7,000 identified rare conditions, accessing the right diagnosis, care, and support can be complex but life changing. The new resources which include a range of animations and stories from both clinicians and patients, provide guidance, insight, and real-life experiences:

A Guide for Health and Social Care Professionals

 A Guide for Patients and Families Affected by Rare Conditions

“In Their Own Words” series, featuring personal stories from individuals living with conditions such as sickle cell anaemia, dysfibrinogenemia, and vasculitis.

Professional Perspectives, including insights from a GP, a paediatric endocrinologist, and a paediatric occupational therapist on providing care and planning for the future.

If you have any queries, or further information, please email: nes.epat@nhs.scot