The Scottish Government commissioned NHS Education for Scotland to develop educational resources to support both people who are living with rare conditions in Scotland, and the health and social care staff who look after them. The work was led by Dr Martina Rodie and Dr Ruth McGowan on behalf of the Rare Disease Implementation Board.
Rare conditions, or rare diseases, may individually affect only a small number of people, but collectively, they are far from rare. Around 1 in 17 people will experience a rare condition in their lifetime, which amounts to nearly half a million people in Scotland.
With over 7,000 rare conditions (and more being identified every year), obtaining the right diagnosis, care, and support can be challenging, but it can also make a life-changing difference.
This video highlights how health and social care professionals can support people living with a rare condition in Scotland.
A transcript of this video can be found here.
This video provides general guidance and support, designed to be helpful to anyone affected by a rare condition in Scotland.
A transcript of this video can be found here.
In this film, Chiamaka tells her story of living with the rare condition sickle cell anaemia.
A transcript of this video can be found here.
In this film, Kimberley tells her story of living with the rare condition dysfibrinogenemia.
A transcript of this video can be found here.
In this film, a clinician is joined by a person living with the rare condition vasculitis. They discuss the impact of living with the disease including the importance of timely access to care services.
A transcript of this video can be found here.
In this film, a paediatric endocrinologist explains the role of data registries in enabling knowledge-sharing and the development of effective health solutions for people living with rare conditions.
A transcript of this video can be found here.
In this film, a GP discusses supporting people living with rare conditions including the importance of future care planning.
A transcript of this video can be found here.
In this film, a paediatric occupational therapist tells her story of supporting children living with rare conditions both in hospital and in the community.
A transcript of this video can be found here.
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If you have any queries, please email: nes.epat@nhs.scot