Katie Stevens

Background

About Katie Stevens

As the Executive Director of Team Telomere, Katie pivotally unites those living with telomere biology disorders through support, outreach, education, and accelerating research. Her passion is to create collaboration amongst TBD researchers, and making sure the patient’s voice is heard first. Katie is highly engaged and involved in advancing science, research and collaboration. She is a managing editor of the Telomere Biology Disorders: Diagnosis and Management Guidelines. She is also published in an international peer-reviewed journal, Angiogenesis, and has presented abstracts at the Cold Spring Harbor, Telomeres & Telomerase conference, the European Molecular Biology Organization (EMBO) telomere conference, and many other engagements and was the first ever patient advocate at the Transplantation and Cellular Therapy Meetings. Katie loves working with the greater rare community, believing firmly that though we are all unique all of our rare stories carry the roadmap that will lead to cures. Katie works on the Rare Foundation Leadership Council for Global Genes. Katie is NORD member leader, and a 200 hour yoga teacher. Through Katie’s lead on ranging efforts, she hopes to expand the capacity and reach of Team Telomere and to pave the way for the rare disease communities to move forward toward accessible and equitable diagnostics, treatments and cures.