The Hairy Cell Leukemia Consortium was launched in 2008 to advance our understanding of HCL, and to enable patients, and those who care for them, increased access to state-of-the-art clinical expertise and therapies. The Consortium seeks to discover new knowledge for improving the treatment and management of HCL.

Over the past two decades, major advances in the diagnosis and treatment for patients with HCL has provided for a bright future for those with a formally fatal disease. Approximately 85%-95% of patients initially enter complete remission and most go on to live a normal life. Despite these advances, patients do not receive “curative treatment.” Roughly 40% of patients who enter complete remission will eventually relapse and require re-treatment.

With the help of a patient who saw an opportunity to make a difference, a group of leading researchers and clinicians from around the world was convened to rekindle interest in HCL and to establish a collaborative organization to address unanswered questions and to provide patients access to the best information and treatment options. Led by Dr. Michael Grever, Chair of the Department of Internal Medicine at The Ohio State University Medical Center, a voluntary Scientific Advisory Board was created to guide the strategic direction of the Consortium.

In addition, the Consortium has partnered with Rockefeller Philanthropy Advisors (RPA), a nonprofit international advisory firm, to facilitate the charitable purposes of the Consortium by serving as the fiscal sponsor. RPA is a registered 501(c)(3) public charity and as a special project of RPA, the Hairy Cell Leukemia Consortium is eligible to receive charitable contributions that are tax-deductible.