INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

Charity number: 1182873
Charity reporting is up to date (on time)

Charity overview

Activities - how the charity spends its money

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.

Income and expenditure

Data for financial year ending 31 December 2023

Total income: £163,599
Total expenditure: £159,431

People

12 Trustee(s)

52 Volunteer(s)

Employees with total benefits over £60,000

No employees have total benefits over £60k for this charity

Fundraising

No information available

Trading

This charity does not have any trading subsidiaries.

Trustee payments

No trustees receive any remuneration, payments or benefits from the charity.

What, who, how, where

What the charity does:
  • The Advancement Of Health Or Saving Of Lives
  • Disability
Who the charity helps:
  • Other Defined Groups
How the charity helps:
  • Makes Grants To Individuals
  • Makes Grants To Organisations
  • Provides Advocacy/advice/information
  • Sponsors Or Undertakes Research
  • Acts As An Umbrella Or Resource Body
Where the charity operates:
  • Throughout England And Wales
  • 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

Governance

Registration history:
  • 09 April 2019: CIO registration
Organisation type:
CIO
Other names:
  • IPWSO (Working name)
Gift aid:
Recognised by HMRC for gift aid
Other regulators:
No information available
Policies:
  • Bullying and harassment policy and procedures
  • Complaints handling
  • Complaints policy and procedures
  • Conflicting interests
  • Financial reserves policy and procedures
  • Internal charity financial controls policy and procedures
  • Internal risk management policy and procedures
  • Investment
  • Paying staff
  • Risk management
  • Safeguarding policy and procedures
  • Safeguarding vulnerable beneficiaries
  • Serious incident reporting policy and procedures
  • Social media policy and procedures
  • Trustee conflicts of interest policy and procedures
  • Trustee expenses policy and procedures
Land and property:
This charity does not own and/or lease land or property

Trustees

Trustees are the people responsible for controlling the work, management and administration of the charity on behalf of its beneficiaries. Generally trustees are treasurer, chair, board member etc. The trustees are responsible for keeping this list up to date and can do this by updating their details as they happen through the online service

12 Trustee(s)

Name Role Date of appointment Other trusteeships Reporting status of other trusteeships
Professor ANTHONY JOHN HOLLAND Chair 24 July 2016
None on record
Lantz Yap Chee Seng Trustee 10 July 2022
None on record
Scott Arant Trustee 10 July 2022
None on record
Tunde Baloghne Liplin Trustee 10 July 2022
None on record
Karin Clarke Trustee 10 July 2022
None on record
Dr Svetlana Labun Trustee 10 July 2022
None on record
Dr Nathalie Kayadjanian Trustee 10 July 2022
None on record
Maria Gabriela Erazo Alban Trustee 10 July 2022
None on record
Craig Andrew Moore Trustee 17 November 2019
None on record
Francois Besnier Trustee 17 November 2019
None on record
Lynn Marie Garrick Trustee 17 November 2019
None on record
Dr Kate Anne Woodcock Trustee 17 November 2019
None on record

Financial history

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Financial period end date

Income / Expenditure 31/12/2019 31/12/2020 31/12/2021 31/12/2022 31/12/2023
Total gross income £151.35k £106.10k £246.59k £330.67k £163.60k
Total expenditure £28.99k £69.83k £161.92k £268.34k £159.43k
Income from government contracts N/A N/A N/A N/A N/A
Income from government grants N/A N/A N/A N/A N/A

Accounts and annual returns

This table shows the charity's record of submitting annual returns, accounts and trustees' annual report (TAR) for the last five financial periods.
Title Reporting year Date received Received Download
Annual return 31 December 2023 16 April 2024 On Time
Accounts and TAR 31 December 2023 16 April 2024 On Time Download Open in new window
Annual return 31 December 2022 20 April 2023 On Time
Accounts and TAR 31 December 2022 20 April 2023 On Time Download Open in new window
Annual return 31 December 2021 12 April 2022 On Time
Accounts and TAR 31 December 2021 12 April 2022 On Time Download Open in new window
Annual return 31 December 2020 09 March 2021 On Time
Accounts and TAR 31 December 2020 09 March 2021 On Time Download Open in new window
Annual return 31 December 2019 04 July 2020 On Time
Accounts and TAR 31 December 2019 04 July 2020 On Time Download Open in new window
Submit annual return Open in new window

Governing document

Details of the type of governing document the charity has and when it was established.
It is not the full text of the charity's governing document.

CIO - ASSOCIATION Registered 09 Apr 2019 as amended on 29 Nov 2019

Charitable 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; AND 3) TO RAISE AWARENESS ABOUT THE NEEDS OF PEOPLE WITH PRADER-WILLI SYNDROME THROUGH THE PROVISION OF INFORMATION.

Contact information

Address:
IPWSO
Salisbury House
2-3 Salisbury Villas
CAMBRIDGE
CB1 2LA
Phone:
07511585700
Email:
office@ipwso.org
Website:

https://www.ipwso.org/ Open in new window