Jayne Hughes

19th August 2022

2022 Shortlisted Nominee

Lifetime Achiever Award


Jayne Hughes set up Amy and Friends (now a registered charity) for children with rare DNA repair disorders such as Cockayne Syndrome, Trichothiodystrophy and other related life limiting illnesses, after her daughter was diagnosed with one in 2007. At that time there were no specialists in the UK with an interest in these illnesses. Jayne now supports over 4000 people and has gone on to raise money and hold an annual scientific/medical conference in the UK for specialists and families. She worked alongside Guy’s and St Thomas’ NHS Foundation Trust and NHS England to secure a grant for the first rare disease clinic for these disorders in the world. This opened in 2019 and recently a further clinic has opened in Netherlands thanks to Jayne’s hard work and dedication. During covid, Jayne gained grants and, alongside a very small team, sent out over 26,000 activity packs to children and families.