FOXG1 UK Policies and Forms

Find the documents, procedures, and forms that support our work and community

Data Protection & GDPR Policy

1. Purpose
This policy explains how FOXG1 UK protects personal data and ensures it is handled responsibly and lawfully.

The charity may collect personal information from families affected by FOXG1 Syndrome,
supporters, donors, and volunteers.

We are committed to protecting people’s privacy and handling personal data in a fair, lawful, and transparent way.

2. What Information We May Hold
We may collect and store limited personal information, including:

Names
Email addresses
Phone numbers
Donation and Gift Aid records
Volunteer contact details
Information families choose to share about FOXG1 (such as genetic mutations)

We only collect information that is necessary to run the charity and support our community.
We will not share identifiable health or personal information without explicit consent.
Any information shared for research purposes will be anonymised so that individuals cannot
be identified.

3. How We Use Personal Information
We use personal data to:

Communicate with families and supporters
Send newsletters or updates
Organise events and fundraising activities
Manage donations and Gift Aid
Coordinate volunteers

We will not sell or share personal data for third-party marketing purposes.

4. Lawful Basis for Processing
We process personal data under one or more of the following lawful bases:

Consent (e.g. for newsletters)
Legitimate interests (e.g. running the charity and maintaining contact with supporters)
Legal obligations (e.g. financial record keeping for HMRC)

5. Storing and Protecting Data
We take appropriate measures to keep personal data secure.
These may include:

Password-protected devices
Secure online storage systems
Restricting access to trustees or authorised volunteers
Secure disposal of data when no longer needed


6. Sharing Information
We may share personal data with trusted third parties where necessary, such as:

Donation and fundraising platforms
Email and communication services
Financial institutions or regulatory authorities where required by law

We may also share anonymous, non-identifiable information with trusted research professionals, such as NHS clinicians and university researchers, to support understanding and research into FOXG1 Syndrome.

We only share the minimum amount of information needed and ensure appropriate safeguards are in place.

7. How Long We Keep Data
We only retain personal data for as long as necessary.
For example:

Financial and donation records are usually kept for 6 years
Mailing list details are kept until someone unsubscribes

After this, data will be securely deleted.

8. Your Rights
Under UK data protection law, individuals have the right to:

Request access to the personal data we hold about them
Request correction of inaccurate or incomplete data
Request deletion of their data
Withdraw consent at any time
Object to or restrict how their data is used
Requests can be made by contacting FOXG1 UK email: info@foxg1.uk.

9. Data Breaches
If a data breach occurs (for example, data being lost, accessed without permission, or shared in error), the trustees will investigate and take appropriate action.
Serious breaches will be reported to the Information Commissioner’s Office where required.

10. Responsibility
The charity’s trustees are responsible for ensuring this policy is followed and reviewed regularly.
All trustees and volunteers who handle personal data must ensure it is kept secure
and confidential.

 

 

 


You can request to have your data removed from our files at anytime by emailing info@foxg1.uk

FOXG1 UK is committed to safeguarding the welfare of children, young people, and vulnerable adults who engage with our charity. We believe that everyone has the right to be protected from abuse, neglect, or exploitation.

This policy sets out how we protect beneficiaries, volunteers, and staff in all our activities, including online peer support, events, and research engagement.

Scope
This policy applies to:
All trustees, volunteers, staff, and contractors

All charity activities, including:
Online support groups and communities (Zoom, WhatsApp, forums)
Face-to-face events or meetings
Research interactions involving participants

Key Safeguarding Principles
FOXG1 UK commits to:
Prevention: Reduce risk of harm through robust procedures and training.
Protection: Ensure prompt action when abuse or neglect is suspected.
Partnership: Work with families, professionals, and statutory agencies.
Empowerment: Listen to children, vulnerable adults, and families and respect their rights.
Accountability: Trustees and volunteers take responsibility for safeguarding and report concerns
without delay.

Definitions of Abuse
Abuse may take many forms, including but not limited to:
Physical abuse – causing physical harm or injury
Emotional abuse – persistent emotional maltreatment or undermining
Sexual abuse – involvement in sexual activity without informed consent
Neglect – failure to meet basic physical and emotional needs
Exploitation – misuse of a person for personal, financial, or other gain

Roles and Responsibilities

Trustees
Ultimate responsibility for safeguarding within FOXG1 UK
Ensure policies, training, and reporting mechanisms are in place
Review safeguarding annually

Safeguarding Lead
Named individual responsible for day-to-day safeguarding oversight
Receive and manage concerns or allegations
Liaise with statutory authorities and the Charity Commission where required
One trustee (or volunteer) with safeguarding experience, trained in child
protection and vulnerable adult safeguarding.

Volunteers and Staff
Follow safeguarding procedures
Report any concerns immediately
Complete mandatory safeguarding awareness training

Safe Recruitment
All trustees, volunteers, and staff in positions with potential access to children or vulnerable adults will:
Complete an application process including references
Undertake Disclosure and Barring Service (DBS) checks if applicable
Receive induction including safeguarding policy and reporting procedures

Online Safeguarding
All online support groups will be moderated by trained adults
Group rules and privacy notices are communicated clearly
No sharing of medical advice; only peer support or signposting
Concerns about safety, inappropriate behavior, or breaches are escalated immediately to the
Safeguarding Lead
Zoom/WhatsApp or other platforms used securely, with privacy settings maximised

Reporting Concerns

Procedure
Record concern factually (who, what, when, where)
Report to Safeguarding Lead immediately
Lead assesses and contacts statutory agencies if required (e.g., Local Authority or police)
Trustees informed without delay
Actions and decisions documented securely
Contact for Advice
Local Safeguarding Children Board or Adults Safeguarding Team
NHS Safeguarding teams
Charity Commission (if serious incident)

Confidentiality
Concerns must be shared on a need-to-know basis only
Protect privacy of individuals involved
Records stored securely, in line with Data Protection & GDPR Policy

Training and Awareness
Trustees, volunteers, and staff receive safeguarding awareness training
Updates provided annually or whenever guidance changes
Online moderation training for peer support groups mandatory

Review
This policy will be reviewed annually by trustees or sooner if guidance or charity operations change.
All updates will be communicated to trustees, volunteers, and staff.

Key Contacts

Safeguarding Lead: Judith Sheppard info@foxg1.uk

Local Authority Children’s Services:

Local Authority Adult Safeguarding Team:

NSPCC Helpline (Children): 0808 800 5000

Action on Elder Abuse (Adults): 0808 808 8141

This policy ensures FOXG1 UK is compliant with: Children Act 1989/2004
Care Act 2014 (vulnerable adults)
UK GDPR / Data Protection Act 2018
Charity Commission guidance on safeguarding

1. Purpose
FOXG1 UK provides information and peer support for individuals and families affected by
FOXG1 syndrome and related conditions.

The purpose of this policy is to ensure that any medical or health-related information shared
by the charity is clearly understood to be informational only and not a substitute for professional medical advice. This policy helps protect beneficiaries, volunteers, and trustees by clarifying the limits of the charity’s role.

2. No Medical Advice
FOXG1 UK does not provide medical diagnosis, treatment, or clinical advice.
Information shared through the charity’s website, publications, social media, support groups, or events is intended for general informational and educational purposes only.
Individuals should always seek advice from a qualified healthcare professional regarding medical concerns, diagnosis, or treatment decisions.

3. Consultation with Healthcare Professionals
Families and individuals are strongly encouraged to consult appropriate healthcare professionals, including:
General practitioners (GPs)
Paediatricians
Neurologists
Genetic specialists
Other qualified medical professionals involved in their care

FOXG1 UK does not replace or override professional medical guidance.

4. Peer Support and Shared Experiences
FOXG1 UK may facilitate peer support between families affected by FOXG1 syndrome.
Participants in support groups may share personal experiences relating to diagnosis, treatments, therapies, and care.

However:
These discussions reflect individual personal experiences
They should not be interpreted as medical advice
Treatment decisions should always be made in consultation with qualified clinicians
Moderators will remind participants that peer support discussions do not constitute medical advice.

5. Online Communities and Social Media
FOXG1 UK may operate online communities or social media groups for families and supporters.

Within these communities:
Members must not present personal opinions as medical advice.
Moderators may remove posts that promote unsafe, unverified, or harmful medical claims.
The charity cannot guarantee the accuracy of information posted by third parties.
Members should verify medical information with healthcare professionals before acting on it.

6. External Links and Resources
The charity may provide links to external websites, research papers, or medical resources.
These are provided for informational purposes only. FOXG1 UK is not responsible for the content, accuracy, or medical recommendations of external organisations or websites.

7. Research Information
FOXG1 UK may share information about ongoing or published research related to
FOXG1 syndrome. Such information is intended to increase awareness and understanding
of scientific developments.

However:
Research findings may be preliminary
Treatments discussed in research may not be clinically approved
Individuals should consult healthcare professionals before considering participation in clinical trials or experimental treatments

8. Responsibility of Users
Individuals using information provided by FOXG1 UK do so at their own discretion.
The charity accepts no responsibility for decisions made based on information shared through its communications.

9. Policy Review
This policy will be reviewed by the trustees at least every two years or sooner if necessary to
reflect changes in the charity’s activities or relevant regulations.

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FOXG1 UK uses cookies on our website to improve user experience, understand website usage,
and support essential site functions. By continuing to use our website, you consent to our use of cookies
in accordance with this policy.

1. What Are Cookies?
Cookies are small text files stored on your device when you visit a website. They help the website
remember your preferences, analyse usage, and improve your experience. Cookies do not harm your
device or store sensitive information such as passwords.

2. Types of Cookies We Use
Type Purpose Duration
Essential Cookies Necessary for website functionality Session
(e.g., form submission, login)

Analytics Cookies Collect anonymous information about Up to 12 months
website use to improve services

Functional Cookies Remember user preferences Up to 12 months
(e.g., language, accessibility settings)

Marketing Cookies (If used) Track usage for fundraising campaigns Up to 12 months
or social media integration

Note: FOXG1 UK does not sell personal information or use cookies to collect sensitive health data.

3. Third-Party Cookies
We may use third-party services such as:
Google Analytics (for anonymous website statistics)
Social media sharing buttons (Facebook, Twitter, Instagram)
These third parties may set cookies on your device. Their use is governed by their own privacy policies.

4. Managing Cookies
You can control or delete cookies using your browser settings.

Most browsers allow you to:
Block all cookies
Delete existing cookies
Receive a warning before cookies are stored
Please note that disabling essential cookies may affect website functionality.

5. Consent
Upon your first visit, our website displays a cookie banner asking for consent to non-essential cookies. You may change your consent preferences at any time via your browser or the cookie settings on the site.

6. Your Privacy
For more information on how FOXG1 UK handles personal data collected through the website, please see our Data Protection Policy.

7. Contact Us
If you have questions about this Cookie Policy or how we use cookies, contact www.foxg1.uk/contact/

1. Purpose
The purpose of this policy is to ensure that all fundraising carried out by or on behalf of FOXG1 UK:

  • Is legal, open, honest, and respectful
  • Maintains the trust of donors, families, and the public
  • Supports the charity’s work safely and effectively

2. Scope
This policy applies to:

  • Trustees
  • Volunteers
  • Staff (if any)
  • Contractors or third-party fundraisers acting for the charity

3. Fundraising Principles
All fundraising must comply with UK law and the Fundraising Regulator Code of  Fundraising Practice.
Fundraising must be ethical, honest, and transparent.
We must respect the privacy and wishes of donors.
Vulnerable people (including children or families affected by FOXG1 Syndrome) must never
be exploited.
All financial donations must be properly recorded, banked, and reported.

4. Methods of Fundraising
The charity may fundraise via:
Donations (online, in-person, or by post)
Events (e.g., community or virtual events)
Sponsorship and challenge activities
Grants and trusts
Merchandise or campaigns
All fundraising activities must be approved by trustees and follow safety guidelines.

5. Accepting Donations
The charity reserves the right to decline donations if accepting them may compromise its  reputation or values.
We will not accept donations from sources involved in illegal activities.
Gift Aid declarations will be processed in compliance with HMRC regulations.

6. Donor Care
Donors will be treated with respect and gratitude.
Donor information will be kept confidential and secure, in line with the charity’s Data Protection Policy.
Donors may opt out of communications at any time.

7. Third-Party Fundraisers
If external individuals or organisations raise funds on our behalf:
They must follow this Fundraising Policy and Fundraising Regulator standards.
They must not give the impression that they represent the charity without permission.
Trustees must approve all third-party fundraising arrangements.

8. Health & Safety
All fundraising events must comply with health and safety regulations.
Risk assessments should be completed for public or community events.
Volunteers and participants must be informed of safety requirements.

9. Complaints and Feedback
The charity will have a clear process for handling complaints about fundraising.
Complaints will be acknowledged promptly and investigated fairly.
Donors and participants will receive feedback and resolution wherever possible.

10. Trustee Responsibilities
Trustees are responsible for ensuring fundraising is lawful, ethical, and transparent.
Trustees approve fundraising campaigns, partnerships, and events.
Trustees monitor fundraising income, expenditure, and risk.

11. Policy Review
This policy will be reviewed annually or sooner if laws or charity activities change.

FOXG1 UK funds research to advance understanding, diagnosis, treatment and management of
FOXG1 syndrome and related Rett-like disorders. Our research funding is designed to deliver public benefit by supporting high-quality, ethically approved research and ensuring that findings are shared openly.

1. Purpose of Our Research Funding
We aim to:
Support research that improves health outcomes and quality of life for individuals affected by FOXG1
Encourage early-stage and pilot studies that can lead to larger funding opportunities
Promote collaboration between researchers, clinicians and the FOXG1 community
Ensure research findings are disseminated for public benefit

FOXG1 UK does not directly conduct or sponsor clinical trials. We fund research hosted by recognised academic institutions, NHS bodies or established research organisations.

2. Types of Grants We Offer
In our early phase, we offer small “micro-grants” to support:
Pilot or feasibility studies
Translational or laboratory research
Data collection or registry development
Quality of life or symptom management research
Grant size and frequency depend on available charitable funds.

3. Eligibility
Applicants must:
Be affiliated with a recognised university, NHS Trust or research institution
Provide institutional approval and financial oversight
Confirm appropriate ethical approval where required
Declare any conflicts of interest
Agree to share research findings publicly

We do not fund retrospective costs or projects without proper governance approval.

4. Assessment Process
All applications are assessed through a transparent and proportionate process:
Eligibility review
Independent scientific review or advisory panel input
Trustee decision

Applications are scored against clear criteria including:
Scientific merit
Relevance to FOXG1
Feasibility
Potential impact for patients and families
Trustees with any conflict of interest withdraw from discussions and decisions.

5. Ethical Standards & Public Benefit
All funded research must:
Comply with UK ethical and regulatory requirements
Be conducted within an appropriate host institution
Be for public benefit
Not confer undue private benefit

FOXG1 UK requires funded researchers to provide progress updates and a final report. We request a plain-English summary suitable for families and supporters.

7. Publication & Dissemination
Researchers must make reasonable efforts to:
Publish results in peer-reviewed journals, where appropriate
Present findings at relevant scientific meetings
Acknowledge FOXG1 UK funding in publications

We are committed to ensuring that the useful results of funded research are shared for the benefit of
the public.

8. Governance & Oversight
Research grants are awarded in line with our charitable objects and in accordance with guidance from the Charity Commission for England and Wales.

We maintain:
A conflict of interest register
A research grants assessment framework
Financial controls and monitoring procedures
Funding decisions are dependent on available unrestricted funds and the charity does not commit to multi-year funding unless resources are secured.

For further information about current funding calls, please contact: info@foxg1.uk