Privacy notice

Who we are

Anisia's Hope - Fighting Batten Disease is a Charitable Incorporated Organisation (CIO) registered in England and Wales, charity number 1219714. Contact: info@fightingbattendisease.org.

What this site does (and does not) collect

• This static website does not currently use advertising cookies, analytics cookies, or third-party tracking pixels.
• Your browser may still send standard technical data to our hosting provider (for example GitHub Pages) — such as IP address and pages requested — as part of serving the site. We do not control those host logs beyond choosing the host.
• If you email us, or use a “mailto” link or form that opens your email app, we receive whatever you choose to send (typically your name, email address, and message).
• When online giving goes live, payment and Gift Aid details will be handled through our payment provider and Gift Aid process. We will update this notice before that flow goes live.

Why we use information you send us

We use enquiry emails to respond to you, keep a record of correspondence where needed for good governance (including complaints and safeguarding concerns), and — if you ask — to add you to updates when a mailing list goes live. We do not sell personal data.

How long we keep it

We keep correspondence only as long as reasonably needed for the purpose you contacted us about, plus any legal or charity-governance retention that applies (for example complaint or safeguarding records). You can ask us what we hold about you by emailing the address above.

Your rights

Depending on UK data-protection law, you may have rights to access, correct, or request deletion of personal data we hold, and to complain to the Information Commissioner’s Office (ICO). Start with us at info@fightingbattendisease.org — put “Privacy” in the subject line.

Children and safeguarding

We take the safety and dignity of children and vulnerable people seriously. See our governance page. Do not email sensitive clinical information about a child unless you need to and are happy for it to sit in email; your clinical team remains the right place for medical records.

External links

Links to the NHS, BDFA, Charity Commission, ClinicalTrials.gov, or social networks take you to other organisations’ sites with their own privacy practices.

CIO 1219714 · Questions: info@fightingbattendisease.org · Contact