About This Project
Building a public FKRP reference website.
FKRP Reference is being built as a focused, medical-reference-first resource for families, clinicians, physiotherapists, and researchers who need a clearer path through FKRP-related information.
Purpose
The goal is to create a structured public knowledge base that makes FKRP information easier to find, review, and understand across multiple audiences without mixing that public reference work with personal medical records.
Who the site is for
- Patients and families who need a reliable starting point.
- Clinicians who want a focused, quickly navigable FKRP reference.
- Physiotherapists and rehabilitation professionals who need practical context.
- Researchers looking for organized papers, trials, and open questions.
Public-only boundary
This repository and website are reserved for public-facing material. Private reports, scans, appointment notes, and identifying patient documents are intentionally excluded from the publishing workflow.
If private source material informs the site, it must first be rewritten into generalized, public-safe, citation-supported content before publication.
Maintenance model
The site now uses a public updates page, explicit review cadence, and issue-based backlog triage so evidence work can keep evolving without ad hoc structure changes.