# NOONAN SYNDROME ASSOCIATION

## Details

- **Country:** England &amp; Wales
- **Charity number:** 1140671
- **Other names:** NSA
- **Status:** Registered
- **Legal form:** Other
- **Registered:** March 3, 2011
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&amp;p_p_lifecycle=0&amp;p_p_state=maximized&amp;p_p_mode=view&amp;_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1140671


## Contact

- **Address:** The Marshal Room, 23-25 Old Row, Whalley Road, Barrow, Clitheroe, Lancashire
- **Postcode:** BB7 9AZ
- **Phone:** 07359 474430
- **Email:** info@noonansyndrome.org.uk
- **Website:** www.noonansyndrome.org.uk



## Activities

**Objects:** THE RELIEF OF ALL PERSONS AFFECTED BY NOONAN SYNDROME BY ALL OR ANY OF THE FOLLOWING MEANS:-1) THE FACILITATION AND PROMOTION OF RESEARCH INTO THE CAUSES, EFFECTS, DIAGNOSIS, TREATMENT AND RELIEF OF NOONAN SYNDROME WITH THE USEFUL RESULTS OF THE RESEARCH BEING DISSEMINATED FOR THE BENEFIT OF THE PUBLIC;2) THE PROVISION OF FACILITIES, FINANCIAL AID, ADVICE AND SUPPORT SERVICES FOR PERSONS SUFFERING FROM NOONAN SYNDROME, THEIR FAMILIES, DEPENDANTS AND CARERS, INCLUDING THE FAMILIES AND DEPENDANTS OF THOSE WHO HAVE DIED FROM NOONAN SYNDROME AND PREGNANT MOTHERS WHERE IT IS BELIEVED THAT THEIR CHILD IS IN DANGER OF BEING BORN WITH NOONAN SYNDROME; AND3) BY ADVANCING THE EDUCATION OF THE PUBLIC IN RELATION TO THE EFFECTS OF NOONAN SYNDROME BY COMMUNICATING REPORTS AND DISSEMINATING INFORMATION BY ANY MEANS OR MEDIA CONCERNING RESEARCH WORK AND STUDIES UNDERTAKEN BY OR ON BEHALF OF THE CHARITY.

**Activities:** The SUPPORT of those affected by Noonan Syndrome and related conditions (on the Ras/MAPK Pathway) by events, social media, publications etc.RESEARCH to advance improvements in understanding and in the care and management of those affected or at risk.RAISING AWARENESS of the condition




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
- **What:** The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Children/young People, People With Disabilities



## Geography

- Northern Ireland
- Scotland
- Throughout England And Wales





## Trustees

| Name | Role | Appointed |
|---|---|---|
| Andrea Dawn Reid-Kelly |  | Nov. 20, 2017 |
| Andrew Peter Thomas Milne |  | Jan. 24, 2026 |
| Danielle Burnett |  | Jan. 24, 2026 |
| David Beatty |  | Jan. 24, 2026 |
| Dr Emma Burkitt-Wright |  | July 13, 2024 |
| Grayson Colin Bowler |  | May 18, 2020 |
| IAN ALEXANDER LEGG BAHon ACIB |  |  |
| Jeanette Dyer |  | May 18, 2020 |
| Sharon Louise Allsopp |  | Jan. 18, 2014 |
| Susan Miller |  | Aug. 13, 2024 |




