Open Registry Project™ – ORP
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 …
- Search for a therapy to halt and perhaps reverse the course of the disease
- Optimizing the daily quality of life for their loved one.
Now, every time a family enters data into the ORP system, they are presented back with information showing their data compared to and augmented by the data of other families with similar disease, symptoms or therapies.
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RARE Meetups™
Have you every met face to face with a family with your RARE disease? Do you feel like you are always reinventing the wheel with regard to getting local care for your loved ones? We understand those struggles and have created RARE Meetups for you.
We can’t assure there are other families in your local area with you disease, but we know there are others in your area with similar symptoms, daily quality of life therapies, and similar educational, medical, and social services struggles. RARE Meetups allows you to join others, in confidence, to share, care fro, and support each other with your experiences to make their daily lives better. And we’re sure others can share and right back at you, too!
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CRDN – Children’s Rare Disease Network
The Children’s Rare Disease Network is an online community that connects those impacted by rare disease, helping facilitate collaboration and knowledge sharing so that people can find the resources and care that they need most quickly.
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