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We are a registered charity dedicated to helping families and individuals affected by Noonan Syndrome (NS), a complex genetic disorder affecting around 1 in 2500 births in the UK.
Our key aims are to provide support, raise awareness, and instigate research.

Welcome to the NSA

What do we do?

We support families and individuals affected by NS with information, webinars with expert medical speakers, Families Day events, and involvement in research projects.

We support health & social care workers and other professionals who have a relevant interest in the condition, with information and guidance.

We facilitate research by participating in projects and ‘pump-priming’ new research, to advance improvements in the understanding, care, and management of the condition.

Research project on learning in young people with NS

We are supporting this important research project, led by Dr Shruti Garg at Manchester University, and encourage parents/carers to get involved with the co-design session on 9th December, and young people between 11-17 years old to take part in the actual study (see image for detail).

Become A Member

Membership is free:
NSA Member* (families and individuals directly affected by NS)
Friend of NSA (wider family & friends, other interested supporters, non-UK residents)
Associate Member (health & social care workers and other professionals with an interest in NS).
*Note: our Constitution only allows UK-based NSA Members to vote at our AGM

Join Us

Support

We support individuals, families, and professionals through shared knowledge and experience. We create a safe, caring community to help reduce isolation in our members.

Awareness

We improve awareness of the condition and its impact to improve clinical practice and understanding in health & social care, education and other professional settings.

Research

We facilitate research with international and national networks to advance improvements in the understanding, care, and management of the condition.