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.

Welcome to our new website!

We’re delighted to launch our new website and hope that it provides a useful source of information and support to our members and for the wider public including healthcare professionals working with people who have Noonan Syndrome.

An important strand of our work at the NSA is awareness raising and along with providing useful medical and wellbeing information for individuals and families affected by Noonan Syndrome, we also celebrate our collective achievements – see our Member Stories and Events pages.

The Resource section will be added to shortly with a series of Factsheets, and we are continually adding to the FAQs as we receive and respond to queries. Please get in touch if you have a specific question.

Welcome to our new website!

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

Support

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

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

Research

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