# INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

## Details

- **Country:** England & Wales
- **Charity number:** 1182873
- **Other names:** IPWSO
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** April 9, 2019
- **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=1182873


## Contact

- **Address:** IPWSO, Salisbury House, 2-3 Salisbury Villas, CAMBRIDGE
- **Postcode:** CB1 2LA
- **Phone:** 07511585700
- **Email:** office@ipwso.org
- **Website:** https://www.ipwso.org/



## Activities

**Objects:** THE OBJECTS OF THE CIO ARE, FOR THE PUBLIC BENEFIT:1) TO PROMOTE THE RELIEF AND TREATMENT OF PEOPLE WITH PRADER-WILLI SYNDROME, AND TO PROVIDE SUPPORT AND ADVICE FOR SUCH PERSONS, THEIR FAMILIES AND CARERS;2) THE ADVANCEMENT OF HEALTH BY PROMOTING, SUPPORTING AND CARRYING OUT CHARITABLE RESEARCH, AND TO DISSEMINATE THE RESULTS OF SUCH RESEARCH, FOR THE PUBLIC BENEFIT INTO THE CAUSE AND TREATMENT OF PRADER-WILLI SYNDROME; AND3) TO RAISE AWARENESS ABOUT THE NEEDS OF PEOPLE WITH PRADER-WILLI SYNDROME THROUGH THE PROVISION OF INFORMATION.

**Activities:** IPWSO works to improve the quality of life for all people with Prader-Willi syndrome and their families worldwide. We provide information and support to caregivers, professionals and families. We encourage national PWS associations to exchange and share their projects and experiences. We fund free testing for diagnosis in countries where it is not available.




## Classification

- **How:** Makes Grants To Individuals, Makes Grants To Organisations, Provides Advocacy/advice/information, Sponsors Or Undertakes Research, Acts As An Umbrella Or Resource Body
- **What:** The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Other Defined Groups



## Geography

- Argentina
- Australia
- Austria
- Belgium
- Brazil
- Bulgaria
- Canada
- Chile
- Colombia
- Cuba
- Czech Republic
- Denmark
- El Salvador
- Estonia
- Finland
- Georgia
- Germany
- Greece
- Hungary
- India
- Ireland
- Israel
- Italy
- Japan
- Mexico
- Netherlands
- New Zealand
- Norway
- Peru
- Poland
- Romania
- Slovakia
- South Africa
- South Korea
- Spain
- Sweden
- Switzerland
- Taiwan
- United States
- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees | Accounts |
|---|---|---|---|---|---|
| Dec. 31, 2024 | £245224 | £217254 |  -  |  -  |  |
| Dec. 31, 2023 | £163599 | £159431 |  -  |  -  |  |
| Dec. 31, 2022 | £330670 | £268340 |  -  |  -  |  |
| Dec. 31, 2021 | £246585 | £161915 |  -  |  -  |  |
| Dec. 31, 2020 | £106098 | £69832 |  -  |  -  |  |




## Trustees

| Name | Role | Appointed |
|---|---|---|
| Brett Peter Thompson |  | June 28, 2025 |
| Dagmar Kiderlen |  | June 28, 2025 |
| Dr Nathalie Kayadjanian |  | July 10, 2022 |
| Jackie Lodge |  | June 28, 2025 |
| Johana Quinn |  | June 28, 2025 |
| Karin Clarke |  | July 10, 2022 |
| Lantz Yap Chee Seng |  | July 10, 2022 |
| Liane Oliveira Mufarrej Motta |  | June 28, 2025 |
| Patrice Carroll |  | June 28, 2025 |
| Professor Nicholas Finer |  | June 28, 2025 |
| Scott Arant |  | July 10, 2022 |
| Tunde Baloghne Liplin |  | July 10, 2022 |