R.A.R.E. Project and PatientsLikeMe®, the world’s leading online health data sharing platform, have joined forces to create the RARE Open Registry Project™ to provide a resource for patients and families facing rare diseases.
The RARE Open Registry Project™ helps to:
- Optimize the daily quality of life for your loved one
- Supports research in therapies to halt and perhaps even reverse the course of a rare disease
- Allows you to contribute your loved one’s medical history to help research a rare disease and similar diseases
- Allows data comparison with other rare disease patients
The R.A.R.E. Project encourages all families facing rare diseases to register with the RARE Open Registry Project™. It’s easy to contribute medical histories and ongoing/daily medical experiences for the benefit of other families and researchers.
When you enter a piece of data into the ORP you will receive a piece of information back – usually in the form of a comparison of how your data compares to others with the same disease, symptoms, or therapies.
We encourage everyone with a RARE disease (or their caregiver) to visit the R.A.R.E. Open Registry Project at PatientsLikeMe and sign up today.