Genomics Partnership Wales: apply to join their patient and public Sounding Board.
Genomics Partnership Wales are now accepting applications to join their patient and public Sounding Board. This is an exciting opportunity for a range of individuals to join the conversation on the future of genomics in Wales.
Expressions of interest are welcome from those with a range of experiences, either directly or as a carer or family member, and can include the following:
· Rare diseases
· Inherited cancers
· Developmental Delay Disorders
· Being offered genetic testing as prediction of disease, or during pregnancy
· Participation in a precision or ‘personalised’ medicine trial, e.g. for cancer
· Any interaction with the All Wales Medical Genomics Service
As the purpose of the Sounding Board is to ensure that the citizen’s voice is represented in the development of genomics and genetics services and research in Wales, we aim to ensure that Sounding Board members are informed of how their contributions impact the genomics programme of work. This also includes raising awareness and knowledge of genomics across our population in Wales, and what it will mean for individuals both today and in the future.
Following a consultation meeting, Sounding Board members are provided with feedback from the sessions which includes:
· Written reports from the session
· Video round-ups from the clinical services, research, or policy professionals who led the consultation session, to discuss the impact that the Sounding Board has had on the development of those specific aspects.
· Updates on the implementation of services and other programme work on which the Sounding Board have been consulted
· Feedback forms to let us know how we can improve the sessions in future
Applications are open until 31st May, if you feel that you or anyone you know may be interested then visit the Genomics Partnership Wales website for more information. https://genomicspartnership.wales/join-our-sounding-board/
Source: Genomics Partnership Wales