Patient Support Groups
A central theme of Nowgen’s academic research is investigating what patients think of clinical genetic services. Many patients from support groups have contributed to this process and provided valuable insights. Nowgen is also working with patient involvement programmes within the NHS to ensure that the patient voice is heard.
Numerous patient support group meetings and networking events have been hosted by Nowgen. If you are interested in using The Nowgen Centre as a venue, please click here (19kb) to download further information.
Nowgen has developed a database of contacts within genetic support groups and has arranged a series of networking evenings to bring people together. The first support group evening was held in April 2004 and numerous events have been held since.
Patient Support Group evenings usually have approximately fifty attendees and run to a standard format. This involves one member presenting information that is relevant to the group, and the remainder of the evening given over for individuals to tell their own stories, to exchange information and talk about their experiences.
Nowgen Digest 6 (735kb) Nowgen and Genetic Support Groups
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