Help for families · Tools
Apps and resources specifically for our families
CASK Research has teamed up with several providers and charities to offer useful tools to our families.
Advoca — the FREE appointment recorder
Advoca listens to your medical appointments and creates an easy-to-read summary in plain language, helping you remember what was discussed and agreed.
- Advoca includes an AI companion you can chat with after your appointment. It can answer questions about your care, based on trusted health information and your own notes.
- Advoca connects you to reliable, trusted resources — such as the NHS website and charity information — that match what was talked about in your appointment.
- Over time, Advoca keeps a secure record of all your appointment summaries in one place. It becomes your own personal health journal — easy to access whenever you need it.
Advoca is completely free to use and is available on iOS and Android devices.
"Advoca ensures that my partner can be kept more informed on what happens in appointments that he can't make. It's so useful." — UK CASK mum
"I used Advoca for the first time and I was blown away by how useful the transcript has been. I would highly recommend it." — UK CASK dad
Why Advoca isn't just useful for individual families — it can drive progress in research
When you use Advoca, the information from your appointment summaries can help build Real-World Evidence (RWE) — a better understanding of what life with CASK-related disorders truly looks like for patients and families. This kind of evidence is vital for improving care, shaping research, and advocating for change.
Examples of RWE Advoca can help generate:
- Symptoms and day-to-day challenges
- Impact on daily activities (work, school, mobility, family life)
- Delays and barriers in accessing care
- Treatment effects and side effects
- Emotional and mental-health impact
- Differences in care between hospitals or regions
- Unmet needs in the community
Simply by using Advoca you can drive change and improve the future for our children.
Patient Passport
CamRare have worked with families and clinicians to create a fillable, personalised health and care passport to help communicate your key medical and care information in an emergency, away from home, or when meeting new people.
Register here to receive your patient passport free of charge: camraredisease.org/patient-passport.
A question will ask if you'd like a customised passport from your patient group. Simply select the box for CASK Research from the menu.
