Progression, symptoms, therapies, medications, research for a cure …
- Have you ever wanted to know how other patient experiences with the same disease compare to yours?
- Do you want to contribute your loved one’s medical history to research for your disease, similar diseases, and even across diseases?
If so, the RARE Open Registry Project is for you! RARE Project and PatientsLikeMe®, the world’s leading online health data sharing platform, have joined forces to provide a resource to RARE disease families to help in the two most critical aspects of caring for a loved one with a RARE disease …
- Optimizing the daily quality of life for your loved one.
- Supporting research for a therapy to halt and perhaps reverse the course of the disease
The RARE Project is encouraging all families with RARE diseases to register with the ORP and to contribute their medical history and ongoing/daily medical experiences for the benefit of other families (including you!) and researchers. Every time you enter a piece of data into the ORP you will get 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 will be providing a registration form on this page in mid-February. Until then, feel free to go directly to the RARE ORP page by clicking here.