The Cystinosis Research Network (CRN) has created a new program to bring light to cystinosis families during these uncertain times. It is called the Brighter Days Care Package Program.
Brighter Days Care Package Program
The CRN is building personalized cystinosis care packages for patients and their families. The packages are free, and can be requested for yourself, your family, or your friends. All you need to do is complete the online form. As a part of this form, you will select what part of your cystinosis journey you or your loved one are on. Are you newly diagnosed, actively awaiting a kidney transplant, or grieving the loss of a loved one? A unique care package will be offered for individuals at each stage. One package will be provided per individual/family per year.
The packages include-
- Educational materials
- A faith-based inspirational book
- A gift card
- A variety of other supportive tools specific to ones individual point in their cystinosis journey
Packages can be sent to an individual’s home or a hospital. If the package is being sent to a hospital, expect approximately 10 days for delivery.
These packages has been made possible by the Shared Health Alliance. This organization provided a grant to the CRN to allow them to create this program.
If you have any questions about the program or how to receive your own package, you can email the organization here.
You can also read more about the programs details here.
