What else for your rare disease patient?
Consideration needs to be given to the general wellbeing of the patient with a rare or genetic condition. Meeting the patient’s medical needs is important, but addressing the social and psychological needs is necessary to meet their health requirements.
- Support Groups The diagnosis of a genetic and/or rare condition in a family member, particularly a child, places enormous stress on a family. Individuals and families may feel the need for personal support offering a specialised understanding of their particular
condition.Support groups provide affected individuals and families with information about the condition and community resources, as well as an understanding and empathic ear. For contact details and further information, refer to the Directory of Genetic and Rare Disease Support Groups and Community Support Organisations.
- Recommendations to support the incorporation of rare disease into social services and policies These recommendations from the European Commission, Commission Expert Group on Rare Diseases highlight issues and recommendations that should be considered when organising holistic care for people living with a rare disease within national health and social care systems.¹
Challenging Behaviour Information
Links to resources that can assist with understanding and supporting children and adults whose behaviour challenges:
The Challenging Behaviour Foundation (CBF) – is a UK based organisation for people with severe learning disabilities whose behaviour challenges. Information and resources are available for families and health professionals.
Positive Behavioural Support Academy – is a UK based organisation that promotes Positive Behavioural Support (PBS) as a framework for working with children and adults with learning disabilities who are at risk of behaviour that challenges. Information on how to provide Positive Behavioural Support can be found on this website.²
² Thank you to GSWA for this information