Supporting Patient Groups in Scotland


In April 2011, Genetic Alliance UK in Scotland launched the Supporting Patient Groups Project.

Patient groups are a vital source of support to patients and families with rare and genetic conditions. They provide information on the condition and the treatments and services available, offer opportunities to share experiences with others affected by the same condition and a means to lobby for equitable access to services and raise awareness of the needs of those affected amongst policy makers, health and social care professionals and the wider public.

Where patient groups do not exist, patients and families often experience extreme difficulty accessing information, services and support. They may also feel immensely isolated, alone and powerless, with no voice through which to influence the services on which they depend.

Genetic Alliance UK is aware of a number of patients and families in Scotland who currently do not have access to support for their condition and have an interest in developing a patient group. We will offer support to patients and families wishing to set up patient groups specific to their rare genetic condition and also extend support to those with syndromes with no name.

Genetic Alliance UK has an in-depth understanding of the needs and experiences of patients and families with rare genetic conditions. We also have extensive experience of developing and working with user-led support groups, harnessing the unique knowledge, expertise and motivation that patients and families often possess. The project will involve:

  • Engaging with patients and families and identifying conditions where a patient group is needed.
  • Advising patients and families on the initial steps in forming a patient group.
  • Assisting patient groups in applying for charitable status.
  • Linking established patient groups to share experiences and offer support.
  • Linking the newly formed patient group with groups for that condition already in existence in other parts of the UK, if applicable.
  • Providing advice on, for example, funding, raising awareness and influencing service provision.

The Project is expected to assist patients of 4-5 conditions to establish support networks in Scotland and the project will run until 2013.

For more information, please contact Natalie Frankish, Development Officer for Scotland:
0131 651 4805