# CYSTINOSIS FOUNDATION OF THE UK

## Details

- **Country:** England &amp; Wales
- **Charity number:** 1074885
- **Other names:** CYSTINOSIS FOUNDATION - UK AND EIRE, CYSTINOSIS SUPPORT FOUNDATION OF THE UK AND EIRE
- **Status:** Registered
- **Legal form:** Other
- **Registered:** March 26, 1999
- **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=1074885


## Contact

- **Address:** Cystinosis Foundation UK, Unit 81304, PO Box 15113, Birmingham
- **Postcode:** B2 2NJ
- **Phone:** 07976272064
- **Email:** advice@cystinosis.org.uk
- **Website:** www.cystinosis.org.uk



## Activities

**Objects:** TO RELIEVE PERSONS SUFFERING FROM CYSTINOSIS AND MEMBERS OF THEIR IMMEDIATE FAMILIES WHO ARE NECESSITOUS CIRCUMSTANCES IN PARTICULAR BY THE PROVISION OF INFORMATION AND FINANCIAL SUPPORT AND BY RAISING PUBLIC AWARENESS OF THE DISORDER.

**Activities:** To provide support to anyone diagnosed with cystinosis, as well as their families and friends.To highlight the disorder to members, the medical profession and the wider community.To assist in the promotion of research into the treatment of cystinosis.To work alongside other similar organisations in understanding  more about metabolic disorders in general

**Area of benefit:** NOT DEFINED




## Classification

- **How:** Provides Advocacy/advice/information, Sponsors Or Undertakes Research, Other Charitable Activities
- **What:** The Advancement Of Health Or Saving Of Lives
- **Who:** Children/young People, People With Disabilities, Other Defined Groups



## Areas of operation

- Northern Ireland
- Scotland
- Throughout England And Wales





## Trustees

| Name | Role | Appointed |
|---|---|---|
| **William George Newman** | Chair | Feb. 23, 2020 |
| Alexandra Innes Hutchison |  | Feb. 23, 2020 |
| Bradley Pearson |  | March 18, 2026 |
| David Nigel Benford |  |  |
| Karthikeyan Ekambaram |  | Feb. 23, 2020 |
| Kirsty Avril Biss |  | March 25, 2025 |
| Thomas Ian Kenning |  | Feb. 23, 2014 |
| Thomas Stuart-Black Kelly |  | March 25, 2025 |


