# CILIOPATHY ALLIANCE

## Details

- **Country:** England & Wales
- **Charity number:** 1148034
- **Status:** Registered
- **Legal form:** Charitable company
- **Registered:** July 10, 2012
- **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=1148034


## Contact

- **Address:** INSTITUTE OF CHILD HEALTH, 30 GUILDFORD STREET, LONDON
- **Postcode:** WC1N 1EH
- **Phone:** 07836686322
- **Email:** fiona.copeland@stonac.co.uk
- **Website:** www.ciliopathyalliance.org



## Activities

**Objects:** TO RELIEVE SICKNESS AND PROMOTE AND PROTECT GOOD HEALTH OF CHILDREN AND ADULTS LIVING WITH CILIOPATHIES, WITH A VIEW TO IMPROVING THEIR CONDITIONS OF LIFE.

**Activities:** Organising & participating in conferences, seminars, workshops etc for health professionals & researchers; organising conferences for ciliopathy support groups; publishing information & educational materials; promoting nationally & internationally the interests of people with ciliopathies; encouraging integrated health & social care; promoting patient involvement in research/clinical management.




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research, Acts As An Umbrella Or Resource Body
- **What:** The Advancement Of Health Or Saving Of Lives
- **Who:** Children/young People, Elderly/old People, People With Disabilities, Other Charities Or Voluntary Bodies



## Areas of operation

- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| March 31, 2025 | £1689 | £10352 | — | — |
| March 31, 2024 | £1201 | £2147 | — | — |
| March 31, 2023 | £398 | £1950 | — | — |
| March 31, 2022 | £6134 | £401 | — | — |
| March 31, 2021 | £24148 | £357 | — | — |



## Trustees

- Audrey Hughes — appointed Oct. 21, 2025
- Dr Elizabeth Forsythe — appointed Feb. 28, 2017
- Dr Hannah Margaret Mitchison — appointed Oct. 9, 2018
- Dr Rhoda Akilapa — appointed Oct. 21, 2025
- Dr Roly David Megaw — appointed May 31, 2022
- Fiona Jayne Copeland — appointed Feb. 23, 2022
- Kerry Leeson-Beevers — appointed June 21, 2023
- Tonia Louise Hymers — appointed March 3, 2022