# CDKL5 UK

## Details

- **Country:** England & Wales
- **Charity number:** 1207922
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** April 18, 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=1207922


## Contact

- **Address:** Henleaze Business Centre, Henleaze House, 13 Harbury Road, BRISTOL
- **Postcode:** BS9 4PN
- **Phone:** 07572986039
- **Email:** admin@curecdkl5.org
- **Website:** www.curecdkl5.org.uk



## Activities

**Objects:** THE OBJECTS OF THE CIO ARETO PRESERVE AND PROTECT THE HEALTH OF INDIVIDUALS DIAGNOSED WITH AND AFFECTED BY CDKL5 IN PARTICULAR BY:A PROVIDING ASSISTANCE AND ADVOCACY IN THE FORM OF SUPPORT GROUPS FOR THE PATIENT COMMUNITY.B PROVIDING UP TO DATE AND RELEVANT INFORMATION TO INDIVIDUALS AND THEIR REPRESENTATIVE DIAGNOSED WITH THE CONDITION AND TO MEDICAL PROFESSIONALS AS A MEANS OF IMPROVING UNDERSTANDING AND RAISING AWARENESS OF CDKL5 C PROMOTING AND SUPPORT RESEARCH IN CDKL5

**Activities:** To preserve and protect the health of individuals diagnosed with and affected by CDKL5 in particular by, providing assistance and advocacy in the form of support groups for the patient community. Providing up to date and relevant information to individuals and their representatives diagnosed with the condition.




## Classification

- **How:** Makes Grants To Organisations, Provides Services, Provides Advocacy/advice/information
- **What:** Disability
- **Who:** Children/young People, People With Disabilities, People Of A Particular Ethnic Or Racial Origin, Other Charities Or Voluntary Bodies



## Areas of operation

- Isle Of Man
- Jersey
- Northern Ireland
- Scotland
- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| March 31, 2025 | £60140 | £29130 | — | — |



## Trustees

- **CAROL-ANNE PARTRIDGE MSc** (Chair) — appointed April 18, 2024
- Amanda Black — appointed April 18, 2024
- Amanda Winwood — appointed May 22, 2024
- Heike Jord Knip — appointed April 18, 2024
- Nilesh Patel — appointed April 18, 2024
- Ruth Kettle-Frisby — appointed May 22, 2024
- Sarah Skillicorn — appointed April 18, 2024
- Shelley Ashton — appointed April 18, 2024
- Siobhan Benjamin — appointed April 18, 2024