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Winners of Gene People Awards 2022 announced

  • Gene People Awards 2022 winners confirmed as part of the Gene People Leadership Symposium 2022, an annual event that brings together inspiring key stakeholders in genetic conditions
  • Gene People (formerly Genetic Disorders UK) launches new awards platform to celebrate excellence in the genetic condition community
  • Genetic conditions have a huge impact on UK health and social care, with over 2.4 million people living with a genetic condition across England, Scotland, Wales and Northern Ireland

A new awards ceremony focused entirely on the genetic condition professional community has announced its winners. The Gene People Awards 2022 commemorates outstanding individuals and groups who have achieved incredible things in genetic conditions, whether across the genetic community or for a specific condition.

The Gene People Awards 2022 focused on achievements from 2020 and 2021, including campaigns and actions during the covid-19 pandemic. This gave the opportunity to celebrate those in the genetic condition community who accomplished amazing things despite the major challenges that they were facing during this time.

Winners and nominations for the Gene People Awards 2022 were announced during day two of the Gene People Leadership Symposium, which brought together senior leaders focused on improving the lives of people affected by genetic conditions.

Awards included the Lifetime Achievement award, presented to Patria Durao Lewi. Patria founded the Cure & Action for Tay-Sachs (CATS) Foundation after her daughter Amelie was diagnosed with the condition in 2017. The foundation has gone on to be part of groundbreaking medical research into the condition, as well as offering vital support for those affected by Tay-Sachs. Amelie passed away from Tay-Sachs in December 2017.

Nominees across all four award categories were selected from the genetic condition community itself. The eventual winners were awarded from an influential panel of judges: Alastair Kent (chair, Gene People and the Rare Disease Advisory Group), Joel Rose, (chief executive, Cardiomyopathy UK) and Emily Clarke (genetic counsellor).

Samantha Barber (chief executive, Gene People) commented: ”The Gene People Awards 2022 further boosted the celebratory and defiant mood to this year’s Gene People Leadership Symposium. We wanted to emphasise just some of the incredible work that’s been achieved in genetic conditions over the last few years, despite the challenges of the pandemic and other factors. We were delighted with the quality of nominations across all categories.”

“We’re very grateful to PTC Therapeutics for sponsoring the Best Research Partnership category. Without their support and that of The Adelphi Genetics Forum and the ABPI the awards and symposium would not have been possible.”

Karen Hobdell (senior director, PTC Therapeutics): “We sponsored the Best Research Partnership category because the partnership between condition¬≠ specific support organisations and industry is so fundamental to how we approach our work at PTC. This opportunity was a chance to champion these partnerships for the whole genetic condition community.”

Following the success of the Gene People Awards 2022 the platform is set to continue, with the Gene People Awards 2023 forming part of the Gene People Leadership Symposium 2023.


The full list of Gene People Awards 2022 nominees and winners is as follows:

Best Campaign

Winner: Huntington’s Disease Alliance UK & Ireland

Highly Commended: Pulse lnfoframe & BHD Foundation/Myrovlytis Trust

Best Research Partnership

Winner: Timothy Syndrome Alliance and The Neuroscience and Mental Health Research Institute, Cardiff University

Nominee: The AKU Society, National Alkaptonuria Centre, and the University of Liverpool

Best Volunteer

Winner: Lee Reavey, NCBRS Worldwide Foundation

Highly Commended: Clare Stacey, Annabelle’s Challenge

Lifetime Achievement

Winner: Patricia Durao Lewi, The CATS Foundation

Nominee: Louise Fish, TSA/Genetic Alliance UK

Nominee: Dr Michael McGrath, Muscle Help Foundation

Nominee: Prof Lakshminarayan Ranganath, AKU Society


About Gene People

Gene People (formerly Genetic Disorders UK) is an umbrella organisation representing everyone affected by a genetic condition.

Their mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.

For more information and interviews

Please contact Samantha Barber (chief executive, Gene People) to further discuss the Gene People Awards 2022 and the Gene People Leadership Symposium 2022 (Samantha.Barber@genepeople.org.uk).

Interviews are available with Samantha Barber and winners of Gene People Awards 2022 categories, upon request.


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