Tools for patients
I've lived with a rare disease and navigated care across more specialists than I can count. These practical tools help you prepare for appointments, track your care, and speak up for yourself.
Rare Disease Medical Binder (Printable)
42 pages to keep your care team, medicines, test results and visit notes in one place. Includes an Emergency Summary, visit worksheets and 122 questions to ask your specialists. Print it or fill it in on your computer.
Rare Disease Digital Planner (GoodNotes)
The same binder, built for iPad, with tappable tabs on every page. Includes 10 ready-made visit pages, a daily symptom check-in and the full question bank. Works in GoodNotes and Notability.