Ichthyosis Support Group Privacy Policy
Last updated: 18 August 2026
The Ichthyosis Support Group (“ISG”, “we”, “us” or “our”) is committed to protecting your privacy and handling your personal information responsibly.
This Privacy Policy explains how we collect, use, store, share and protect your personal information when you interact with ISG, including when you:
- visit our website, www.ichthyosis.org.uk;
- become an ISG member;
- contact us for information, advice or support;
- attend an ISG event, camp, conference or regional gathering;
- volunteer with us;
- make a donation or fundraise for us;
- subscribe to our newsletter;
- participate in an ISG campaign;
- complete a survey or provide feedback;
- participate in research opportunities; or
- otherwise communicate or engage with ISG.
Please read this Privacy Policy carefully so that you understand how we use your personal information and the rights you have in relation to it.
1. Our Privacy Promise
We promise to:
- keep your personal information safe and secure;
- only collect information that we reasonably need;
- explain clearly how and why we use your information;
- never sell or rent your personal information;
- only share your information where we have a lawful reason to do so;
- respect your choices about marketing communications;
- provide appropriate ways for you to access and manage your information;
- regularly review the information we hold and delete information we no longer need; and
- comply with applicable UK data protection legislation.
2. Who We Are
The Ichthyosis Support Group (ISG) is the data controller responsible for the personal information we collect and use.
Ichthyosis Support Group
Registered office: 12 Manor Fields, Alrewas, Staffordshire, DE13 7DA
Correspondence address: Ichthyosis Support Group, First Floor Rubra One, Mulberry Business Park, Fishponds Road, Wokingham RG41 2GY UK
Email: isg@ichthyosis.org.uk
Website: www.ichthyosis.org.uk
A data controller is the organisation responsible for deciding how and why personal information is processed.
If you have any questions about this Privacy Policy or how we use your information, please contact us using the details above.
3. What Personal Information Do We Collect?
The information we collect depends on how you interact with ISG.
This may include the following.
Contact information
- Name
- Address
- Email address
- Telephone number
- Emergency contact information where appropriate
Membership information
If you become an ISG member, we may collect:
- Your name and contact details;
- Your date of birth or age where relevant;
- Information about your relationship to someone with ichthyosis;
- Information about the type of ichthyosis affecting you or your child;
- Your membership preferences;
- Your involvement with ISG activities and events; and
- Your communication preferences.
Health and medical information
Because ISG supports people living with ichthyosis, we may collect health information where you choose to provide it or where it is necessary to provide a particular service or activity.
This may include:
- Diagnosis;
- Type of ichthyosis;
- Symptoms;
- Treatment information;
- Medication information;
- Allergies;
- Medical requirements;
- Dietary requirements where related to health;
- Accessibility requirements;
- Information needed to safely participate in camps or events; and
- Other health information that you choose to provide.
Health information is special category personal data under UK data protection law.
We will only process health information where we have both:
- an appropriate lawful basis under Article 6 of the UK GDPR; and
- an appropriate condition for processing special category data under Article 9.
The ICO confirms that organisations must identify and document both requirements when processing special category data.
4. Children’s Information
ISG provides services and activities for children and young people affected by ichthyosis.
We may therefore process personal and health information relating to children, including information needed for:
- Membership;
- Camps;
- Events;
- Safeguarding;
- Medical requirements;
- Dietary requirements;
- Accessibility;
- Emergency arrangements; and
- Providing appropriate support.
We take particular care when processing children’s information.
Where appropriate, we will obtain information or authorisation from a parent or guardian. However, parental consent is not automatically required for every type of processing. The appropriate lawful basis will depend on the purpose for which the information is being used.
Children have their own data protection rights, and these rights should be considered according to their age, maturity and understanding.
5. How We Collect Your Information
We may collect personal information:
- directly from you;
- through membership registration forms;
- through event registration forms;
- through our website;
- when you contact us by telephone, email or post;
- when you contact us through social media;
- when you make a donation;
- when you fundraise for ISG;
- when you volunteer;
- through surveys and feedback forms;
- through photographs, videos or member stories where appropriate;
- from parents or guardians;
- from healthcare professionals or other organisations where lawful and appropriate; or
- from publicly available information where appropriate.
6. Why We Use Your Information
We may use your information to:
Provide support
- Respond to enquiries;
- Provide information about ichthyosis;
- Support members and families;
- Understand individual support needs;
- Provide appropriate information and resources.
Manage membership
- Process membership applications;
- Maintain membership records;
- Communicate with members;
- Provide membership services.
Organise events
- Register attendees;
- Manage camps, conferences and regional gatherings;
- Understand accessibility requirements;
- Manage dietary and medical requirements;
- Contact emergency contacts where necessary;
- Support safeguarding and participant welfare.
Manage volunteers
- Process volunteer applications;
- Organise volunteering activities;
- Manage training;
- Conduct DBS checks where appropriate;
- Maintain appropriate volunteer records.
Fundraising and donations
- Process donations;
- Administer Gift Aid;
- Manage fundraising activities;
- Thank donors;
- Maintain appropriate financial records.
Communications
- Send newsletters;
- Inform members about events;
- Share relevant ISG news;
- Promote campaigns and fundraising activities;
- Provide information about research opportunities.
Improve our services
We may use information and feedback to understand the needs of the ichthyosis community and improve the services we provide.
Research
Where appropriate, we may inform members about research opportunities and may support research projects relating to ichthyosis.
7. Our Lawful Bases for Using Personal Information
Under the UK GDPR, we must have a lawful basis for processing personal information.
Depending on the circumstances, ISG may rely on:
Consent
Where you have actively given us permission to use your information for a specific purpose.
For example, you may give consent to receive certain marketing communications or for your photograph to be used for a particular campaign.
Contract
Where processing is necessary to provide a service or fulfil an agreement with you.
Legal obligation
Where we are required to process information to comply with the law.
Legitimate interests
Where processing is necessary for ISG’s legitimate interests, provided those interests are not overridden by your rights and freedoms.
Vital interests
Where processing is necessary to protect someone’s life or in an emergency.
We will determine and document the appropriate lawful basis before processing personal information. The ICO states that organisations should identify their lawful basis before processing and include the relevant basis in their privacy information.
8. Health Information and Special Category Data
Some of the information ISG collects is health information and is therefore special category data.
This requires additional protection.
Examples include information about:
- Ichthyosis diagnosis;
- Symptoms;
- Treatment;
- Medication;
- Medical needs;
- Allergies;
- Physical or mental health;
- Accessibility requirements where these reveal health information.
We will only process this information where we have identified an appropriate Article 6 lawful basis and Article 9 condition.
For example, depending on the circumstances, processing may be necessary to provide support or organise a safe event, or may be based on explicit consent where appropriate.
ISG will document its approach to processing special category data and maintain appropriate policies and safeguards. The ICO recommends that organisations document their lawful basis, special category condition and retention arrangements.
9. Who We Share Your Information With
ISG does not sell, rent or trade your personal information.
We may share information with trusted organisations where necessary and lawful.
These may include:
- Our CRM/database provider;
- Email and newsletter providers;
- Website and IT providers;
- Event and booking providers;
- Payment providers;
- Printing and mailing providers;
- Professional advisers;
- Healthcare professionals where appropriate;
- Research organisations where appropriate;
- Camp and activity providers;
- Safeguarding professionals or relevant authorities where necessary; and
- Government, regulatory or law enforcement bodies where legally required.
We only share information that is reasonably necessary for the relevant purpose.
10. Our Third-Party Service Providers
ISG uses a number of third-party organisations to help us deliver our services.
These may include systems for:
| Service | Example |
|---|---|
| Membership/CRM | Beacon CRM |
| Email/newsletters | Mailchimp |
| Website hosting | Access Evo |
| Online forms | MS Forms |
| Event registration | TryBooking |
| Payment processing | Stripe, PayPal, Gocardless, |
| Gift Aid | GiftAider, Beacon CRM |
| Cloud storage | Microsoft Azure |
| Website analytics | Google Analytics |
Where these organisations process personal information on our behalf, ISG will have appropriate contractual arrangements in place and will take reasonable steps to ensure that personal information is handled securely and lawfully.
11. International Transfers
Some of our service providers may process personal information outside the United Kingdom.
Where personal information is transferred outside the UK, ISG will ensure that the transfer is made in accordance with applicable UK data protection law.
Depending on the destination and circumstances, this may involve:
- an adequacy decision;
- appropriate contractual safeguards;
- an international data transfer agreement; or
- another legally recognised safeguard.
We will not treat submission of personal information as blanket consent to international transfers.
12. How Long We Keep Your Information
ISG will not keep personal information indefinitely.
We will only retain information for as long as it is reasonably necessary for the purpose for which it was collected, or where we are required to retain it for legal, regulatory, safeguarding, accounting or other legitimate purposes.
Our retention periods include:
| Type of information | Proposed retention |
|---|---|
| Active membership information | While membership is active |
| Former member information | 5 years after membership ends |
| Event registration information | 10 years after event |
| Camp medical information | For the period necessary for the camp and safeguarding requirements, then securely deleted in accordance with ISG’s retention schedule |
| Safeguarding records | In accordance with ISG safeguarding/retention requirements |
| Volunteer records | Duration of volunteering + [min 20 years] |
| DBS information | In accordance with DBS requirements and ISG policy |
| Donation records | In accordance with financial/legal requirements |
| Gift Aid records | In accordance with HMRC requirements |
| Newsletter/marketing information | Until you unsubscribe, plus appropriate suppression records |
| Website enquiries | 10 years after resolution |
| Research participation information | According to the specific research project’s requirements |
| Financial records | In accordance with applicable legal requirements |
We regularly review the information we hold and securely delete or anonymise information that we no longer need.
13. Security of Your Information
ISG takes appropriate technical and organisational measures to protect personal information against:
- Unauthorised access;
- Accidental loss;
- Theft;
- Misuse;
- Unauthorised disclosure;
- Unauthorised alteration; and
- Unlawful destruction.
Access to personal information is restricted to authorised staff, trustees, volunteers or service providers who need access for legitimate purposes.
Where appropriate, we use:
- Password protection;
- Access controls;
- Secure cloud systems;
- Multi-factor authentication;
- Secure data transfer;
- Staff and volunteer confidentiality requirements; and
- Data protection and safeguarding procedures.
No internet transmission or electronic storage system can be guaranteed to be completely secure. However, ISG will take reasonable and appropriate measures to protect the information we hold.
14. Data Breaches
If ISG becomes aware of a personal data breach, we will assess the breach and take appropriate action.
Where required by law, we will notify the Information Commissioner’s Office and/or affected individuals.
We will maintain appropriate records of personal data breaches in accordance with our data protection procedures.
15. Marketing and Newsletters
We may contact you about:
- ISG news;
- Newsletters;
- Events;
- Regional gatherings;
- Camps;
- Campaigns;
- Fundraising;
- Awareness activities;
- Research opportunities; and
- Other relevant ISG activities.
Where consent is required for electronic direct marketing, we will obtain appropriate consent.
You can unsubscribe from marketing communications at any time by using the unsubscribe link provided in our emails or by contacting us.
We will respect your marketing preferences.
16. Photography, Video and Member Stories
ISG may photograph or film people at events or use member stories for:
- Newsletters;
- Our website;
- Social media;
- Awareness campaigns;
- Fundraising materials;
- Annual reports;
- Promotional materials; and
- Other communications about ISG.
Where appropriate, we will obtain consent before using an identifiable photograph, video or personal story.
We will take particular care when using information or images involving children.
If you have previously given consent and wish to withdraw it, please contact us.
Withdrawal of consent will not affect processing that took place before consent was withdrawn. It may also not always be possible to remove material that has already been printed, distributed or shared by third parties.
17. Research
ISG may provide information about research opportunities involving ichthyosis.
Where ISG directly participates in research or facilitates the sharing of personal information for research, we will explain how information will be used and identify the appropriate lawful basis and safeguards.
Participation in research is voluntary unless otherwise explained as part of a specific project.
Choosing not to participate in research will not affect your ISG membership or access to our support.
18. Cookies and Similar Technologies
Our website uses cookies and similar technologies.
Cookies may be used to:
- Make the website function correctly;
- Remember preferences;
- Improve website security;
- Understand how visitors use our website; and
- Improve our website and services.
Some cookies are strictly necessary for the website to operate.
Other cookies, including certain analytics, advertising and tracking technologies, are not strictly necessary and may require your consent before they are placed on your device.
The ICO confirms that organisations generally need to obtain prior consent for non-essential cookies and similar technologies. Continuing to browse a website does not, by itself, constitute valid consent.
Our cookie consent mechanism will provide appropriate choices, including the ability to reject non-essential cookies.
19. Website Analytics
We may use analytics services to understand how visitors use our website.
Depending on the service used, information may include:
- Pages visited;
- Approximate geographical location;
- Device type;
- Browser type;
- Time spent on the website;
- How visitors reached our website; and
- Interactions with our website.
Analytics cookies will only be used where the required consent has been obtained.
The ICO specifically confirms that analytics cookies are not automatically exempt from consent requirements simply because they are used for website analytics.
The analytics services currently used by ISG are:
**Google Analytics**
20. Cookie Policy
For further information about the specific cookies and similar technologies used by our website, please see the Cookie Policy.
The Cookie Policy should include:
- Cookie name;
- Provider;
- Purpose;
- Type;
- Duration;
- Whether it is essential or non-essential; and
- Whether information is shared with a third party.
21. Links to Other Websites
Our website may contain links to other websites, including healthcare organisations, charities, research organisations and external service providers.
ISG is not responsible for the privacy practices, security or content of external websites.
We recommend that you read the privacy policy of any external website before submitting personal information.
22. Your Data Protection Rights
Depending on the circumstances, you have rights under UK data protection law, including the right to:
- Request access to your personal information;
- Ask us to correct inaccurate or incomplete information;
- Request deletion of your personal information in certain circumstances;
- Request restriction of processing in certain circumstances;
- Object to certain processing;
- Withdraw consent where we rely on consent;
- Request data portability where applicable; and
- Make a complaint to the Information Commissioner’s Office.
These rights are not absolute and may be subject to legal exemptions.
23. Subject Access Requests
You have the right to ask ISG for a copy of the personal information we hold about you. This is known as a Subject Access Request (SAR).
There is normally no charge for making a SAR.
We will normally respond within one month of receiving your request and having the information necessary to verify your identity, although this period may be extended in certain circumstances.
To make a SAR, please contact:
Email: isg@ichthyosis.org.uk
Post:
Ichthyosis Support Group
First Floor Rubra One, Mulberry Business Park, Fishponds Road, Wokingham RG41 2GY UK
We may need to verify your identity before providing information.
If you are requesting information on behalf of another person, including a child, we may need evidence that you have authority to make the request.
24. Children’s Data Protection Rights
Children have their own data protection rights.
Depending on their age, maturity and understanding, a child may be able to exercise their rights themselves.
Parents or guardians may also be able to exercise rights on behalf of a child where appropriate.
ISG will consider each request carefully and act in accordance with applicable data protection law.
25. Complaints
If you have concerns about how ISG has handled your personal information, please contact us in the first instance.
Email: isg@ichthyosis.org.uk
Post:
Ichthyosis Support Group
First Floor Rubra One, Mulberry Business Park, Fishponds Road, Wokingham RG41 2GY UK
We will investigate your concern and seek to resolve it.
You also have the right to complain to the Information Commissioner’s Office (ICO).
Information Commissioner’s Office – Make a complaint
26. Changes to This Privacy Policy
We may update this Privacy Policy from time to time to reflect:
- Changes to our services;
- Changes to the way we process personal information;
- Changes to technology;
- Changes to our suppliers or data processors;
- Changes to data protection legislation or guidance; or
- Changes to our legal or regulatory obligations.
The most recent version will always be published on our website.
Where a change is significant, we will take appropriate steps to bring it to your attention.
27. Contact Us
If you have any questions about this Privacy Policy or how ISG uses personal information, please contact us:
Ichthyosis Support Group
Registered office:
12 Manor Fields, Alrewas, Staffs, DE13 7DA
Correspondence address:
First Floor Rubra One, Mulberry Business Park, Fishponds Road, Wokingham RG41 2GY UK
Email:
isg@ichthyosis.org.uk
Website:
www.ichthyosis.org.uk
Last updated: 18 August 2026
