# KLEEFSTRA SYNDROME UK

## Details

- **Country:** England & Wales
- **Charity number:** 1208059
- **Other names:** KLEEFSTRASYNDROME.ORG
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** April 30, 2024
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=0&p_p_state=maximized&p_p_mode=view&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1208059


## Contact

- **Address:** 3-4 spire house, waterside business park, ashbourne
- **Postcode:** DE6 1DG
- **Phone:** 01335346772
- **Email:** chair@kleefstrasyndrome.org
- **Website:** www.kleefstrasyndrome.org



## Activities

**Objects:** THE OBJECTS OF THE CIO ARE TO RELIEVE THE NEEDS OF PEOPLE WITH KLEEFSTRA SYNDROME AND THEIR FAMILIES AND PEOPLE CONNECTED TO, CARES FOR, SUPPORTS, OR WORKS WITH SOMEONE WITH KLEEFSTRA SYNDROME BY:-• INCREASING AWARENESS OF THE SYMPTOMS OF KLEEFSTRA SYNDROME TO SUPPORT DIAGNOSIS AND PROFESSIONAL AND MEDICAL ASSISTANCE;• THE PROVISION OF INFORMATION, ADVICE AND OTHER ASSISTANCE, TO SUPPORT THOSE AFFECTED WITH KLEEFSTRA SYNDROME;• THE PROMOTION OF RESEARCH INTO THE CAUSES, TREATMENT AND MANAGEMENT OF KLEEFSTRA SYNDROME AND • DISSEMINATING AND PUBLISHING THE USEFUL RESULTS OF ANY SUCH RESEARCH; AND• UNDERTAKING ANY OTHER CHARITABLE ACTIVITIES IN CONNECTION WITH KLEEFSTRA SYNDROME.NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH [SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005] AND [SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008].

**Activities:** The relief of Kleefstra Syndrome by: increasing awareness of Kleefstra Syndrome in the UK; promoting research into the causes, effects, treatment and management of Kleefstra Syndrome and disseminating and publishing the useful results of any such research; and providing help and support to families affected by the Syndrome




## Classification

- **How:** Provides Advocacy/advice/information
- **What:** Disability
- **Who:** People With Disabilities



## Areas of operation

- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| Dec. 31, 2024 | £3587 | £13271 | — | — |



## Trustees

- **Wendy Elizabeth Hocking** (Chair) — appointed July 23, 2023
- Anna Gibbs — appointed July 23, 2023
- Annette Read — appointed March 12, 2026
- Barbara Janet Roberts — appointed July 23, 2023
- Courtney Helliwell — appointed May 1, 2024
- Dr Katherine Palmer — appointed July 23, 2023
- Hannah Banfield — appointed May 1, 2024
- Vytautas Berzanskis — appointed July 23, 2023