INTERNATIONAL GAUCHER ALLIANCE

Charity number: 1192011
Charity reporting is up to date (on time)

Charity overview

Activities - how the charity spends its money

The IGA is an international umbrella group representing the interest of Gaucher patients and those of non-for-profit Gaucher patient groups as well as rare disease groups throughout the world.

Income and expenditure

Data for financial year ending 31 December 2023

Total income: £395,659
Total expenditure: £365,122

People

10 Trustee(s)

Employees with total benefits over £60,000

Number of employees
£70k to £80k 1

Fundraising

No information available

Trading

One or more trustees are also directors of the subsidiaries

Trustee payments

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

What, who, how, where

Main way of carrying out purposes is grant making
What the charity does:
  • Education/training
  • The Advancement Of Health Or Saving Of Lives
Who the charity helps:
  • Other Charities Or Voluntary Bodies
  • Other Defined Groups
  • The General Public/mankind
How the charity helps:
  • Provides Advocacy/advice/information
  • Acts As An Umbrella Or Resource Body
Where the charity operates:
  • Throughout England And Wales
  • Albania
  • Argentina
  • Australia
  • Austria
  • Belgium
  • Bosnia And Herzegovina
  • Botswana
  • Brazil
  • Bulgaria
  • Canada
  • China
  • Colombia
  • Croatia
  • Czech Republic
  • Denmark
  • Estonia
  • Finland
  • France
  • Germany
  • Greece
  • India
  • Israel
  • Italy
  • Japan
  • Jordan
  • Kazakhstan
  • Latvia
  • Lithuania
  • Luxembourg
  • Macedonia
  • Mexico
  • Moldova
  • Mongolia
  • Morocco
  • Mozambique
  • Netherlands
  • New Zealand
  • Norway
  • Pakistan
  • Paraguay
  • Poland
  • Portugal
  • Romania
  • Russia
  • Slovakia
  • Slovenia
  • South Africa
  • Spain
  • Sweden
  • Switzerland
  • Thailand
  • Tunisia
  • Turkey
  • Ukraine
  • United States

Governance

Registration history:
  • 27 October 2020: Standard registration
  • 21 December 2020: Funds received from 297271 THE HELEN MANUEL FOUNDATION
Organisation type:
Charitable company
Other names:

No other names

Company number:
06653373 Open in new window
Gift aid:
Not recognised by HMRC for gift aid
Other regulators:
No information available
Policies:
  • Bullying and harassment policy and procedures
  • Campaigns and political activity policy and procedures
  • Complaints policy and procedures
  • Conflicting interests
  • Engaging external speakers at charity events policy and procedures
  • Financial reserves policy and procedures
  • Internal charity financial controls policy and procedures
  • Internal risk management policy and procedures
  • Paying staff
  • Risk management
  • Safeguarding policy and procedures
  • Serious incident reporting policy and procedures
  • Social media policy and procedures
  • Trustee conflicts of interest policy and procedures
  • Trustee expenses policy and procedures
  • Volunteer management
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

10 Trustee(s)

Name Role Date of appointment Other trusteeships Reporting status of other trusteeships
Raul Chertkoff Trustee 08 November 2024
None on record
Christine White Trustee 08 November 2024
None on record
Andre Balzekiene Trustee 08 November 2024
None on record
Patricia Lucki Zifonsky Trustee 08 November 2024
None on record
Aimee-Kate Bosch Trustee 09 May 2022
None on record
Francisco Jose Jorge Carreiro Trustee 09 May 2022
None on record
Diana Paulina Pena Aragon Trustee 19 January 2022
None on record
Suyog Sathe Trustee 23 May 2020
None on record
Aviva Rosenberg Trustee 25 October 2019
None on record
Irena Znidar Trustee 05 October 2010
None on record

Financial history

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Financial period end date

Income / Expenditure 31/12/2021 31/12/2022 31/12/2023
Total gross income £293.57k £251.41k £395.66k
Total expenditure £267.49k £293.23k £365.12k
Income from government contracts N/A N/A N/A
Income from government grants 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 24 October 2024 On time
Accounts and TAR 31 December 2023 24 October 2024 On time Download Open in new window
Annual return 31 December 2022 24 October 2023 On time
Accounts and TAR 31 December 2022

(These accounts
have been qualified)

24 October 2023 On time Download Open in new window
Annual return 31 December 2021 26 October 2022 On time
Accounts and TAR 31 December 2021 26 October 2022 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.

MEMORANDUM AND ARTICLES INCORPORATED 22 JUL 2008 AS AMENDED BY SPECIAL RESOLUTION REGISTERED AT COMPANIES HOUSE ON 12 OCT 2020

Charitable objects

THE OBJECTS FOR WHICH THE COMPANY IS ESTABLISHED ARE THE RELIEF OF SICKNESS AND THE PRESERVATION OF HEALTH AMONGST PEOPLE SUFFERING FROM THE RARE GENETICALLY INHERITED CONDITION OF GAUCHER DISEASE WHEREVER THEY ARE IN THE WORLD ("OBJECTS") AND IN DOING SO THE COMPANY WILL: 1.1 COLLECT INFORMATION ON THE LATEST DEVELOPMENTS IN THE UNDERSTANDING, MANAGEMENT AND TREATMENT OF GAUCHER DISEASE AND TO DISSEMINATE SUCH INFORMATION TO ALL PARTIES WHO HAVE AN INTEREST IN GAUCHER DISEASE AND OTHER SIMILAR DISORDERS; 1.2 PROVIDE INFORMATION SUPPORT GUIDANCE AND ENCOURAGEMENT TO GROUPS OF INDIVIDUALS REPRESENTING GAUCHER PATIENTS GLOBALLY; 1.3 REPRESENT THE INTERESTS OF GAUCHER PATIENTS TO EUROPEAN AND INTERNATIONAL ORGANISATIONS AND BODIES AND TO ENSURE THAT THE VOICE OF THE GAUCHER PATIENT IS HEARD AT ALL TIMES. 1.4 ENCOURAGE AND PROMOTE SCIENTIFIC AND MEDICAL RESEARCH INTO GAUCHER DISEASE AND IMPROVED THERAPEUTIC APPROACHES AND TO SEEK TO ENSURE ALL SUCH RESEARCH RECOGNISES THE CENTRALITY OF THE GAUCHER PATIENT. 1.5 WORK WITH THE MEDICAL AND SCIENTIFIC COMMUNITY TO DEFINE PRIORITIES IN THE UNDERSTANDING OF GAUCHER DISEASE ITS MANAGEMENT AND TREATMENT. 1.6 WORK WITH, FACILITATE, SUPPORT AND ENCOURAGE THE ACTIVITIES OF THE EUROPEAN WORKING GROUP ON GAUCHER DISEASE (EWGGD) AND OTHER ORGANISATIONS OR WORKING GROUPS WITH SIMILAR OBJECTIVES. 1.7 BE A FORUM TO ADDRESS ETHICAL ISSUES ARISING FROM THE STUDY OF GAUCHER DISEASE 1.8 ENSURE THAT APPROPRIATE TREATMENT IS AVAILABLE TO ALL PATIENTS WITH GAUCHER DISEASE WHO REQUIRE TREATMENT REGARDLESS OF RACE, CREED, COLOUR ETHNIC ORIGIN OR NATIONAL OR RELIGIOUS BACKGROUND; AND 1.9 CARRY OUT ANY OTHER ACTIVITIES THAT ADVANCE THE OBJECTS.

Contact information

Address:
86-90 Paul Street
London
EC2A 4NE
Phone:
01453796402
Email:
admin@gaucheralliance.org
Website:

www.gaucheralliance.org Open in new window