patient filling in an online survey using a laptop

Patient Data

A patient-owned registry comprising over 20% of the international disease population.  Patient-reported data on symptom prevalence, paroxysmal symptom frequency, duration, and burden.  Analysis of patient priorities.  Critical data for all phases of research, from mechanistic studies to clinical trials design.

We are passionate about representing patients faithfully.

Patient data survey

RARE Hope has a growing registry of patient data

Two previous surveys, developed in close collaboration with AHC patient representatives from Cure AHC and AHCF, capture patient-reported data on symptoms and lived-experience of AHC patients.

For Researchers:

Read a preview of some of our findings.

For Patients

Enroll in our registry

Take the survey: Patient Priorities Survey

Take the survey: Sleep, Triggers, Medications, and Headaches: Insight into the AHC Patient Experience

 

Please contact us for more information about this registry.