Pxe International Inc

In the mid-90s, PXE was a very misunderstood disease. The prevailing literature said that patients would die very prematurely. Finding this unacceptable, Sharon and Patrick Terry started PXE International, Inc, a non-profit organization dedicated to treating this disease by facilitating scientific research (with funding and a biobank) and supporting patients (with verified and accurate information).

 

After 15 years of unyielding dedication, the organization now has over 4600 registered patients and scientific labs all over the world seeking further understanding and a treatment.