The Cystinosis Research Network
The Cystinosis Research Network is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about Cystinosis. They are a private, nonprofit 501(c)(3) corporation, whose vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Resources & Support
Patient Worthy Posts on Cystinosis
Would You Volunteer to Break Your Legs? This Kid Did!
You know those commercials, “What would you do for a Klondike bar?” Think about that, but instead of getting ice cream you get to play baseball.
What This Grandfather Does for His Grandson Makes Us All Jealous
Now in its fifth year, a team of highly motivated cyclists from Sandpoint has once again pedaled some 3,000 arduous miles across the United States,
Learn How to Defy the Odds from this Cystonosis Mother
Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past
This Girl Got a Kidney for Her Birthday, And It’s Awesome!
For a “normal” teenage girl, life’s biggest problems usually include not being able to decide which outfit to wear to school, which boy to say
An Art Exhibit is Traveling 6000 miles, Here’s Why You Should Care
For a disease that has so little attention drawn to it, there’s quite a few people that want to bring it to the forefront in
Breakthrough Cystinosis Cure Is On the Way!
On a press release reported from BusinessWire, the Cystinosis Research Foundation, CRF, awarded unparalleled grants of $1,022,879 to research institutions making it possible to further
