Add your voice: Applications to join the Genomics Partnership Wales Sounding Board are now open for 2025!

Genomics, the study of our DNA, is transforming healthcare in Wales – and once again, members of the public are being invited to help shape its future by joining the Genomics Partnership Wales Patient and Public Sounding Board.

The Sounding Board brings together a wide variety of individuals including those with direct and indirect experience of genetic and rare conditions and inherited cancers, as well as those with a passion for improving genomic services in Wales. With four consultations taking place across the year, members are given the opportunity to take part in meaningful dialogue, hear fresh perspectives, and share their own experiences and insights to directly influence policy, services, and research.

For some individuals, the motivation to get involved has been deeply personal.

Existing member Esther explains her reasons for joining: “Three years ago, I was diagnosed with metastatic lobular breast cancer, and shortly after, I was found to have a BRCA2 gene mutation. Thanks to genomic testing, I’m now on a targeted treatment that won’t cure me, but will hopefully extend my life.”

Esther says joining the Sounding Board has been a way to give something back. “I’ve been able to share my experiences as a patient and contribute to discussions that could improve outcomes for others.”

For others, their involvement is rooted in professional curiosity.

Yvonne, who joined nearly two years ago, was first introduced to the opportunity through her role at Cardiff and Vale University Health Board. “I was very excited to have been chosen to join, and looked forward to the following two years as a member,” she says. Her interest in genetics started in an unlikely place. “It began many years ago when I found a pocketbook on DNA for 50 pence – that opened up a world of interest in our family.”

Yvonne says her favourite part of being a member has been the people she’s met. “There’s such a fabulous mix of people, and the stories and situations shared have been marvellous and very touching. The Sounding Board has given me a boost in professional confidence, and it’s kept my brain active through all the thought-provoking topics and discussions.”

Emily joined the Sounding Board after the loss of her daughter to an extremely rare condition, in the hope that her experience could help others. “Her care wasn’t always perfect, and joining the Sounding Board has helped me turn pain into purpose. It’s been eye-opening to learn how genomic services are evolving, and I’ve been able to contribute in a way that honours her memory.”

Sounding Board members meet both online and in-person to discuss key issues such as testing, research, access to data, and healthcare equity. These sessions offer a platform for learning, impact, and connection.

“Meeting other patient advocates is one of the best parts,” says Esther. “Everyone brings something different to the table. I’ve learned a lot from the consultations and from the stories people share.”

The GPW Sounding Board is currently looking for new members from across Wales, from all walks of life. Whether you have direct experience with a genetic or rare condition or inherited cancer, are caring for someone who does, or simply want to support a more inclusive and informed approach to genomic healthcare, your voice is welcome.

To find out more about joining the Sounding Board and to register your interest, visit: Join our Sounding Board

Help us shape the future of genomics in Wales – your voice matters.