Noonan Syndrome Association

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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.

Educational Toolkit for Schools - invitation to take part in research

We are working with researchers at Loughborough University to develop educational guidance for schools and colleges grounded in what actually works. We are inviting various stakeholders to be involved:

Parents/Carers of children with Noonan Syndrome
Older children and young people (aged 10+) with Noonan Syndrome
Education and Allied Health Professionals working with children and young people with Noonan Syndrome

Please contact Dr Katie Coveney (Responsible Investigator) for more information if you would like to take part: c.m.coveney@lboro.ac.uk +44 (0)1509 223350

Educational Toolkit for Schools - invitation to take part in research

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.