Patient-based Registry

Noonan Syndrome Association UK

The Noonan Syndrome Association (NSA) has over 750 members across the UK who are adults with the condition, parents/carers of children with the condition, and health and social care professionals connected to people with the condition. Noonan Syndrome (NS) is a genetic disorder affecting around 1 in 1800 births. We aim to significantly improve our members’ quality of life through Support, Research, and Raising Awareness. We:

  • Support those affected by Noonan Syndrome, and their families and carers, through information, national events, social media, publications, and facilitating contact with people who are in - or have been through - similar circumstances.
  • Be involved in medical and social research through participating in and ‘pump-priming’ research projects which aim to improve understanding of the condition and its care and treatment; and
  • Improve awareness of the condition and its impact on the lives of those affected.

Main contacts

Photo of Jeanette Dyer
Jeanette Dyer
Photo of Ian Legg
Ian Legg