Overview and open trials placeholders
Education & research
Research & updates
An honest information hub for families and professionals. Pages below are placeholders until content is medically and trustee reviewed. We do not invent trial results, enrolment claims, or efficacy claims.
By form
CLN1–CLN14
Family support and this news hub cover all forms of Batten disease / NCL equally — CLN1 through CLN14. Each form has an Overview page and a dedicated Open trials page (placeholders until medically and trustee reviewed).
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Overview and open trials placeholders
Standards
How we will source updates
When real content is added, it must be dated, sourced (for example ClinicalTrials.gov, peer-reviewed literature, or recognised NCL centres), and medical-advisor reviewed. See also our education accuracy framework.
Public registries
We will only list trial information that can be checked on public registries such as ClinicalTrials.gov — after review. We will not invent NCT numbers or study names.
Peer-reviewed literature
Published findings will be cited from peer-reviewed sources. Summaries will stay careful: hopeful without hype, and never presented as medical advice.
Recognised centres
We may signpost publicly available information from recognised specialist centres and resources when it is appropriate and reviewed for this site.
BDFA (signpost)
The Batten Disease Family Association (BDFA) is another UK registered charity (number 1084908). We list it as a signpost only.
Our funding
Our research grants
We have not yet awarded research grants. Trustee policy for future awards — including that research prioritisation may have a particular focus on CLN2 — is published on Governance. That focus does not exclude other CLN forms from this news hub or from family support.
Important disclaimer
We do not give medical advice. Information on this site is for education under our charitable object (3) — including early diagnosis and available treatments — and is not a substitute for your clinical team.
Always speak to a qualified clinician about diagnosis, care, and any trials that may be relevant to your child’s specific form of Batten disease / NCL. Placeholder pages do not contain trial results, enrolment status, or efficacy claims.
Questions: info@fightingbattendisease.org · Anisia's Hope - Fighting Batten Disease, CIO 1219714.
Need support, not research news?
Start with newly diagnosed guidance, other support signposts, or email us.