# SHWACHMAN DIAMOND SYNDROME UK

## Details

- **Country:** England & Wales
- **Charity number:** 1164269
- **Other names:** SDSUK
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Nov. 5, 2015
- **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=1164269


## Contact

- **Address:** 5 LINCOLN ROAD, WASHINGBOROUGH, LINCOLN
- **Postcode:** LN4 1EQ
- **Phone:** 07949036041
- **Email:** Sds@sdsuk.org
- **Website:** http://www.sdsuk.org



## Activities

**Objects:** TO PROVIDE RELIEF TO PATIENTS AND FAMILIES IN THE UK (INCLUDING SCOTLAND AND NORTHERN IRELAND) WHO ARE AFFECTED BY SHWACHMAN-DIAMOND SYNDROME (SDS) IN PARTICULAR BUT NOT EXCLUSIVELY BY:? PROMOTING ACCESS TO HEALTH AND EDUCATIONAL SERVICES FOR AFFECTED PATIENTS THROUGHOUT THE UK,? SUPPORTING RESEARCH INTO THE PATHOPHYSIOLOGY OF SDS AND ITS CURRENT AND POTENTIAL TREATMENT AND THE PUBLIC DISSEMINATION OF THE USEFUL RESULTS THEREOF, AND? PROVIDING AND ENCOURAGING OTHERS TO PROVIDE EDUCATIONAL RESOURCES AND ACTIVITIES ABOUT SDS FOR THE BENEFIT OF FAMILIES, PROFESSIONALS AND THE PUBLIC, BOTH NATIONALLY AND INTERNATIONALLY.

**Activities:** To support patients and families in the UK affected by Shwachman-Diamond Syndrome (SDS) by: promoting access to health and educational services for affected patients throughout the UK, supporting research into the pathophysiology of SDS and its current and potential treatment, and providing educational resources and activities about SDS for the benefit of families, professionals and the public.




## Classification

- **How:** Makes Grants To Individuals, Makes Grants To Organisations, Provides Human Resources, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
- **What:** General Charitable Purposes, Education/training, The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Children/young People, People With Disabilities



## Areas of operation

- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| Oct. 31, 2024 | £54760 | £65637 | — | — |
| Oct. 31, 2023 | £61691 | £11804 | — | — |
| Oct. 31, 2022 | £8294 | £0 | — | — |
| Oct. 31, 2021 | £28969 | £15401 | — | — |
| Oct. 31, 2020 | £10645 | £2065 | — | — |



## Trustees

- **Heather Couch** (Chair) — appointed Dec. 12, 2025
- Andrew Olding — appointed Dec. 9, 2025
- Kapil Gotecha — appointed Nov. 3, 2019
- Rebecca Cuffe — appointed Nov. 7, 2025