# ALSTROM SYNDROME EUROPE

## Details

- **Country:** England & Wales
- **Charity number:** 1160362
- **Other names:** AS EU
- **Status:** Registered
- **Legal form:** Charitable company
- **Registered:** Feb. 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=1160362


## Contact

- **Address:** 4 St. Kitts Close, TORQUAY
- **Postcode:** TQ2 7GD
- **Phone:** 07970071675
- **Email:** catherine.lewis@alstrom.org.uk
- **Website:** www.alstrom.org.uk



## Activities

**Objects:** TO RELIEVE SICKNESS AND TO PROMOTE AND PROTECT THE HEALTH OF PEOPLE AFFECTED BY ALSTRÖM SYNDROME FOR THE PUBLIC BENEFIT BY ADVANCING EDUCATION, RAISING AWARENES AND PROMOTING RESEARCH INTO ALSTRÖM SYNDROME.

**Activities:** Alstrom Syndrome Europe is a network of medical and scientific professionals from across the EU working to educate and share information and promote research into the many complex aspects of the ultra rare disease Alstrom Syndrome.  The medical professionals  work with affected patients in their respective countries and liaise with patient groups.

**Area of benefit:** NOT DEFINED




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research, Acts As An Umbrella Or Resource Body
- **What:** General Charitable Purposes, The Advancement Of Health Or Saving Of Lives, Disability, Recreation
- **Who:** Children/young People, People With Disabilities, People Of A Particular Ethnic Or Racial Origin



## Areas of operation

- Austria
- Belgium
- Cyprus
- Denmark
- Finland
- France
- Germany
- Greece
- Hungary
- Italy
- Netherlands
- Norway
- Portugal
- Spain
- Sweden
- Switzerland



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| April 5, 2025 | £0 | £0 | — | — |
| April 5, 2024 | £0 | £732 | — | — |
| April 5, 2023 | £0 | £732 | — | — |
| April 5, 2022 | £0 | £63 | — | — |
| April 5, 2021 | £0 | £645 | — | — |



## Trustees

- **DR MAFFEI** (Chair) — appointed July 2, 2014
- Bernd Rosenbichler — appointed Jan. 28, 2025
- DR HIWOT — appointed July 2, 2014
- Dr SELMA DUZENLI — appointed Nov. 9, 2017
- Kerry Leeson-Beevers — appointed July 1, 2024
- Professor Diana Valverde — appointed Jan. 10, 2016