Do you or someone you know have an inherited or rare disease, or experience of genetic testing?

Help shape the future of genomics services in Wales by sharing your experiences, and help to improve the patient experience for all those who come into contact with clinical genomics services in Wales?  

Genomics Partnership Wales brings together experts from across different health specialties together to make sure that patients benefit from getting the correct genetic testing when they need it. Genomics Partnership Wales is also looking for members of the public to join a Patient and Public Sounding Board which aims to help improve patient experiences and clinical services for better health and wellbeing of people living with rare and genetic conditions. No prior medical or scientific knowledge of genomics is required.

Genomics is the study of a person's genes (the genome), including how those genes interact with each other and the person's environment. Genetics is the study of genes and how they can be passed on, inherited. Both play an increasingly important role in improving personal and public health, contributing to disease diagnosis, prevention, treatment, and surveillance.

What experience do I need to help?

• People who have personal (or care for someone who has) experience of genetic testing / genomics / precision medicine / clinical trials / inherited cancer / rare diseases / developmental delay disorders
• People who have good communication skills
• We welcome applications from people who are members of under-represented groups
• We aren’t seeking people who have professional experience working in the field of genomics
• People who are available to attend (virtual) induction training on 2nd July 2025 and the first meeting on 3rd July 2025

For a more in-depth list please see the role description

What will I be asked to do?

• You will be asked to provide your thoughts and comments on the development of patient information documents, patient communications, help shape the genomics service and make sure patients, and their families are at the heart of the work carried out.
• The team would like to meet with shortlisted individuals online via MS Teams on W/C 16th June to discuss the role and what is required to be part of the Patient and Public Sounding Board.

How long will I be needed for?

• You will be needed for two years. This will include attending a one-day induction meeting on 2nd July 2025 with the first meeting held on 3rd July 2025. Meetings will then be every four months, dates to be confirmed. 

What are some of the benefits for me?

• Contributing to the development of new policies, projects and services related to the activities of Genomics Partnership Wales
• The opportunity to contribute to shaping research that can change services for patients and their families living with rare diseases.

What support is offered?

• Cover reasonable travel expenses and additional carer or childcare costs, in line with their host organisation guidelines
• Offer payment for time of £25.00 per hour (people can request less if they are in receipt of state benefits).  If you are receiving any benefits, you can access confidential advice from the Benefits Advice Service for Involvement.
• Provide a one-day induction session to introduce the subject matter and ongoing support and information when specialist topics arise
• Provide resources to ensure you have all the information on genomics that you may need

If anyone interested in applying would like to hear more from a current Sounding Board member about what the role is like they can contact the team on (GenomicspartnershipWales@wales.nhs.uk) who can put them in touch with an existing member.

Please complete the form below