RAO Network
Team Telomere
A child of a parent with a TBD checks out her blanket that was sent via Team Telomere’s Care Package program. Since 2017, the Care Package program brings the community to the door of patient families across the globe. They have sent over 200 care packages which include blankets for comfort, swag for community, and clinical guidelines to help educate families and their medical teams. Photo courtesy of Team Telomere.
A child of a parent with a TBD checks out her blanket that was sent via Team Telomere’s Care Package program. Since 2017, the Care Package program brings the community to the door of patient families across the globe. They have sent over 200 care packages which include blankets for comfort, swag for community, and clinical guidelines to help educate families and their medical teams. Photo courtesy of Team Telomere.
Team Telomere supports those in the dyskeratosis congenita/telomere biology disorder community. Executive Director Katie Stevens was brought to the rare community through her eldest child’s journey with severe bone marrow failure due to extremely short telomeres.
As part of the Rare As One Network, Team Telomere aims to accelerate their network of Centers of Excellence across the U.S. and the world, thus expanding their patient population to include currently unrecognized and underserved communities. Additionally, they hope to connect patients and researchers dedicated to finding better treatments and even a cure.
