The INADcure Foundation has partnered with the New York Stem Cell Foundation to house the INAD biobank. A biobank is a type of biorepository that stores patient-specific biological samples for use in research. Establishing this biobank allows for research ready patient and unaffected family member cells to be easily accessible and delivered to scientists.
The INADcure Foundation is currently accepting skin and blood samples from children diagnosed with INAD, as well as their parents and siblings.
Samples can be collected and accepted from patients located anywhere in the world.
All samples are completely anonymized.
The process is very easy. Once you have made the decision to participate, the New York Stem Cell Foundation will send out a kit for your doctor to use, along with easy directions on how to send it back.
Please speak to your doctor to discuss your options to get a skin biopsy or blood drawl. Doctors who collect samples, or who may be able to assist with setting this up for you, include: primary care physicians, dermatologists, geneticists, and neurologists.
For more information, please email [email protected].