Despite its occurrence in c.1 in 2500 live births, families affected by NS can feel very isolated. It was in response to a call for dedicated charity that NSA was first established so supporting families – parents, guardians, carers, individuals with NS, siblings – is a key priority. Some examples of how this is done include:
- Since 2011, an annual national Families for Families Day to which all our member families are invited. The day gives families the chance to hear about the latest developments in medical research and treatment and special education changes and to meet the medical and education specialists but also importantly to meet other families.
- Informal get-togethers of families across the country as well as some more organised local and regional events.
- The provision of two “official” Noonan Syndrome Facebook pages as well as several run by families, all of which offer an opportunity for networking and information sharing for families.
- A free 5 days a week helpline service for families provided by qualified nursing staff through the Newlife Foundation for Disabled Children.The Newlife Nurse Helpline – freephone 0800 902 0095 or email firstname.lastname@example.org – has already supported more than 1,650 Noonans’ calls.
- A Medical Advisory Group consisting of leading figures in the fields of Noonan Syndrome diagnosis, treatment and research in the UK – you can find out more about them here (hyperlink needed)
- Fact sheets on NS including the various key symptoms of the condition
- Regular newsletters about the charity, latest developments, fundraising etc