Trustees Report for Financial year Ending June 2025
Registered Charity Number: 1184321
Address: 1354 Peartree Cir OAKVILLE, ONTARIO L6M 2J2 CANADA
Contact Details: Cristian Baigorria
Prepared September 2, 2025 Approved by Trustees: Oct, 2025
Table of Contents
STRUCTURE, GOVERNANCE AND MANAGEMENT .......................................................................... 3
CHARITY TRUSTEES: .......................................................................................................................... 2 MANAGEMENT:............................................................................................................................... 2 ABOUT THE GLOBAL ALLIANCE FOR PKU (GAP) ...................................................................................... 2 GAP STRATEGY STATEMENT ............................................................................................................... 3 GAP ACTIVITIES FOR 2019/2020 YEAR ........................................................................................... 3 ACHIEVEMENTS ........................................................................................................................... 4 FINANCIAL REVIEW ...................................................................................................................... 4 DECLARATIONS ............................................................................................................................ 5
Structure, Governance and Management
The Global Association for PKU is a registered charity with Charity Commission of England and Wales, it is a Charitable Incorporated Organisation (CIO) governed by charitable objects.
Charity trustees:
Name
Date appointed
ALEJANDRO SPATARO LOUISE HEALY DENIZ ATAKAY TOBIAS HAGEDORN CRISTIAN BAIGORRIA RONALDO LOPES MONIQUE COOPER JOHN ADAMS JOSE DE JESUS MUNOZ NAVARRO LISA MILBERG RHONDA CONNOLLY BERNADETTE GILROY CATHERINE WARREN SARAH GALLAGHER
08 July 2019 08 July 2019 (resigned 20 APR 2023) 08 July 2019 08 July 2019 08 July 2019 08 July 2019 08 July 2019 08 July 2019 08 July 2019 11 August 2022 (resigned 16 MAY 2024) 11 August 2022 (resigned 16 MAY 2024) 13 October 2022 (resigned 27 APR 2023) 16 May 2024 16 May 2024
Management:
The charity has an executive committee responsible for management of the organisation. The office bearers are voted on at each AGM. GAP has a detailed constitution that describes the governance and management of the organisation including the election of office bearers, member criteria, management and trustee terms and other key governance and management issues.
Chair: John Adams Vice-chair: Jose de Jesus Munoz Navarro Treasurer: Tobias Hagedorn Secretary: Cristian Baigorria Executive Committee members: Jose de Jesus Munoz Navarro, Cristian Baigorria, Tobias Hagedorn and John Adams
Trustees generally meet every 2 months.
About the Global Alliance for PKU (GAP)
The charity was registered in 8 July 2019. The purpose of the GAP is to: 1) To promote and protect the physical and mental health of sufferers of phenylketonuria (PKU) through the provision of support, education and practical advice and in such other ways as the trustees consider appropriate; and (2) advance the education and understanding of the general public in all areas relating to PKU. The trustees developed a strategic statement to describe how the organisation will fulfil this intent.
GAP Strategy Statement
A regional and several country-based PKU patient organizations from around the world have collaborated to form the first Global Association for PKU – known as GAP. This global entity will serve as a supportive umbrella organization to regional and national patient organizations and groups in bridging the gap for PKU worldwide.
The Organization’s Vision is that all people living with PKU, despite their origin, will be able to reach their full potential.
Our mission is to advance PKU as a global health priority and strengthen PKU associations and groups throughout the world.
As people living with PKU, our priorities are:
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➢ To create a global platform for PKU advocacy that includes ensuring universal access to newborn screening and diagnosis, treatments and comprehensive care;
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➢ To mentor like-minded patient associations and groups and offer best practices and support that are sensitive to their experiences, culture, language(s) and laws;
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➢ To increase collaboration among PKU researchers, scientists, clinicians and patient groups to move basic science and research forward to accelerate new knowledge, treatments, and a cure.
GAP Activities for 2024/2025Year
During the last year the organization wasn’t able to perform any activities. We did not find a solution to establishing a bank account in Canada, where two trustees reside or any other country where a trustee resides when the Charity is established under UK law. Canadian banking compliance officers declined to approve a bank account in two occasions.
Achievements
Trustees are reviewing options for the future of the Charity and its registration in the UK.
Financial Review
The GAP have no bank accounts, reserve funds and have not spent any funds this year. The charity is not holding any funds on behalf of others.
Declarations
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Signature(s) Full name(s) Cristian Baigorria Position (eg Secretary, Chair, etc)[Secretary ] Date December 1, 2025
Charity Commission
Charity Commission Annual Return 2025
GLOBAL ASSOCIATION FOR PKU
Charity registration number: 1184321
Most of the information you give in this form will become publicly available on the Register of Charities. Any field that the Charity Commission will not display will be clearly marked. This document is a record of the information provided in the Annual Return 2025.
Financial period
Financial period start date
01/07/2024
Financial period end date
30/06/2025
Income and spending
Income £
£0
Spending £
£0
Number of contracts from government
How many contracts (other than grant agreements) did your charity receive from central government or a local authority during the financial period for this return?
0
Number of grants from government
How many grants did your charity receive from central government or a local authority during the financial period for this return?
0
Income breakdown
Donations and legacies (excluding Endowments Received)
£0
Charitable activities
£0
Other trading activities
£0
Investments
£0
Other
£0
Recipients of grants
Please round all figures to the nearest pound (do not enter decimal points or commas).Individuals
£0
Other charities
£0
Other organisations that are not charities
£0
Trustee payments
Excluding out of pocket expenses, for what were any of the trustees paid during the financial period for this return?
⊠ e. None of the trustees have been paid
Did any of the trustees resign and take up employment with your charity in the financial period of this return?
No
Income from outside the UK
Did your charity receive income from outside of the United Kingdom in the financial period of this return?
No
Delivering activities outside the United Kingdom
Did your charity deliver charitable activities outside of the United Kingdom in the financial period of this return?
No
Spending outside of the United Kingdom
Did your charity spend funds outside of the United Kingdom in the financial period of this return?
No
Trading subsidiaries
Does the charity have any trading subsidiaries?
No
Employment contract types
People were permanently employed by your charity
0
People were on fixed-terms contracts with your charity
0
Self-employed people were working for your charity
0
Governance policies
Internal charity financial controls policy and procedures
Yes
Safeguarding policy and procedures
No
Financial reserves policy and procedures
No
Complaints policy and procedures
No
Serious incident reporting policy and procedures
No
Internal risk management policy and procedures
No
Trustee expenses policy and procedures
Yes
Trustee conflicts of interest policy and procedures
Yes
Investing charity funds policy and procedures
Yes
Campaigns and political activity policy and procedures
Yes
Bullying and harassment policy and procedures
Yes
Social media policy and procedures
Yes
Engaging external speakers at charity events policy and procedures
Yes
External risk and impact
Donations,
Not applicable
Other income - grants
Not applicable
Other income - contracts
Not applicable
Other income - investment
Not applicable
Expenditure on charitable activities
Not applicable
Expenditure on overheads
Not applicable
Number of volunteers
Not applicable
Number of employees
Not applicable
Number of trustees
Not applicable
Fundraising activities
Not applicable
Capacity to deliver services
Not applicable
Total service demand
Not applicable
Volunteers
Excluding trustees, provide an estimate of the number of volunteers who carried out charitable activities on behalf of your charity in the United Kingdom during the financial period of this return?
0
Privacy statement
Any information you give us will be held securely and processed only in accordance with the rule on data protection. We will not disclose your personal details to anyone unconnected to the Charity Commission unless:
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you have consented to their release; or
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we are legally obliged to disclose them; or
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we regard disclosure as either (a) necessary so that we can properly carry out our statutory functions or (b) necessary in the public interest.
We may share and disclose information about you with relevant public authorities, regulatory bodies and agencies, outside the Charity Commission but only if:
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we can lawfully do so; and
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we decide that disclosure is necessary for national security, crime detection,
prevention, and law enforcement, or other issues in the public interest
Information we collect about you
We will use this information:
To enable us to carry out our statutory functions and duties;
This will include the following actions:
(a) update, consolidate, and improve the accuracy of our records;
(b) undertake crime detection and prevention and law enforcement and assist the third parties specified above to investigate or prevent crime and carry out law enforcement;
(c) data analysis, testing, research, statistical and survey purposes
Information we receive from other sources.
Information we receive from other sources
We may combine this information with information you give to us and information we collect about you.
We may use this information and the combined information for the purposes set out above (depending on the types of information we receive).
We will ensure that any such disclosure and use is proportionate; considers your right to respect for your private life; and is done fairly and lawfully in accordance with the data protection principles of the Data Protection Act.
The Data Protection Act 1998 regulates the use of 'personal data', which is essentially any information, however stored, about identifiable living individuals.
As a 'data controller' under the Act, the Charity Commission must comply with it. Any changes we may make to our privacy statement in the future will be set out in the replacement version of this form.
Please check back frequently to see any updates or changes to our privacy policy.
Declaration
Your role at the charity (select one):
⊠ Trustee
CRISTIAN Given names BAIGORRIA Family name 6472442592 Telephone number
cristian.baigorria@globalpku.org
05/11/2025
Date submitted
It is a criminal offence under section 60 of the Charities Act 2011 for anyone to knowingly or recklessly provide false or misleading information to the commission; this includes suppressing, concealing or destroying documents.