Membership is open to:

  • Anyone who has Noonan Syndrome
  • Families affected by Noonan Syndrome
  • Medical Practitioners

Members have access to:

  • Local and national events
  • Local support groups
  • Factsheets and research papers

Membership to our organisation is free.

The Noonan Syndrome Association seeks to:

  • Support those affected by Noonan Syndrome and related conditions (on the Ras/MAPK pathway) in the UK and their carers.
  • Support medical and social research into the condition
  • Improve awareness of the condition and its impact on those affected.

The Noonan Syndrome Association belongs to its membership – families, carers and people affected by Noonan Syndrome and those with professional expertise in Noonan Syndrome.

Complete the form below to be a part of the Local, National and International Noonan Community.

Completing this form

You are under no obligation to answer all the questions and we respect your right to choose which details you share with us. The reason we ask the specific questions on this form is to help us:

  • Better understand our membership, to offer appropriate support, activities and events; know how many members have NS and how many are carers/parents or otherwise connected to the person with the condition – this helps with funding applications, research projects, and activities planning.
  • Understand where our members are – we are currently looking into ways of supporting members with activities at a regional level and your information will help with this planning.
  • Seek external funding for activities or research projects with specific groups and/or specific conditions – be able to quote accurate statistics about our membership to funders.

All information is stored securely in accordance with Data Protection legislation. We do not share your information with others. We hold your details so we can keep you updated on the charity’s work. A copy of our Privacy Policy is available on request or here on our website.