Global Genes and PatientsLikeMe®, the world’s leading online health data sharing platform, have joined forces to create the RARE Open Registry Project™ (RORP) to provide a resource for patients and families fighting rare and genetic diseases. Every time a family enters data into the RORP™ system, they receive information back showing their data compared to other patients fighting similar diseases or taking similar therapies. The more you share, the easier it will be to find patients like you or your loved ones.
RARE Open Registry Project™ Goals
- Optimize the daily quality of life for your loved one
- Supports research into therapies of rare and genetic diseases
- Allows you to contribute you or your loved one’s medical history to help drive research
- Allows data comparison with other patients facing similar diseases
We encourage all families facing rare and genetic 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.
