Support for Patients with Hairy Cell Leukemia
We provide a range of support for patients and families, including webinars, in-person seminars, and an online patient community. We are also expanding an international patient data registry, an important platform to advance HCL research and address unanswered questions.
Webinars and Forums
Educational Webinars
The HCLF hosts regular webinars during which hematologists and researchers from HCL Centers of Excellence provide an expert overview of HCL diagnosis, current treatment and clinical trials. Learn more. >>
Community Roundtables
We have expanded our support programs for patients with a Community Roundtable series. Roundtables are moderated forums on Zoom providing peer-to-peer support to patients and their families. Each roundtable is facilitated by HCLF staff, board members and volunteers.
Patient Seminars
For over a decade, the HCLF has hosted a free full-day seminar, connecting patients and families with expert speakers and informative panel discussions, and unparalleled opportunities for networking with patients who have similar experiences. Learn more. >>
HCLF Women’s Group
We launched the women’s group in 2020 to help women with HCL build and strengthen their network of support, supporting each other through diagnosis and treatment. The group is led by board members and volunteers and hosts regular webinars and peer-to-peer support meetings. Learn more. >>
Outreach to Hispanic & Latino HCL Patients and Families
The impact of HCL can vary among patients and their families, including within the Hispanic and Latino communities. To better understand these differences and strengthen information and services, we are seeking Hispanic and Latino individuals with HCL and their family members to participate in interviews.
Ask an Expert
We want all patients and family members affected by hairy cell leukemia to have the information they need to feel empowered and supported through treatment and beyond. Through our Ask an Expert program, we provide facts, resources, and referrals to support patients in making informed health care decisions. We consult the most current research as well as our network of internationally recognized advisors and HCL experts to tailor our response.
Ask your question! Complete the online form using the button below or call our office at 224-355-7201.
HCL Patient Data Registry
Hairy cell leukemia is a rare disease. Patients with HCL are diagnosed and treated by many different doctors around the world. This makes it difficult for researchers to study hairy cell leukemia fully. The HCLF has invested in the development and expansion of an HCL Patient Data Registry to improve access to research-quality data and broaden the scope of current research.
To maximize the impact of the Registry, we need as many patients as possible to participate.
Online HCL Community
Whether you are newly diagnosed, have recently relapsed, or are in remission, it can help to connect with other patients who may understand your experiences. Through our online forum, please ask questions, learn from other patients and share your own story.
Clinical Trials in HCL
Clinical trials are carefully controlled research studies and necessary to develop and study ways to improve treatment and quality of life for patients with hairy cell leukemia. Clinical trials may be available for patients at any stage of their HCL.
We encourage patients to discuss clinical trials with their doctor and healthcare team and consider the availability of a trial for their unique diagnosis, treatment history, and needs.
Looking for assistance with co-pays or travel to appointments? In addition to our programs, we encourage those affected by hairy cell leukemia to seek the support they need, when and where they need it. There are cancer-related organizations that provide a variety of resources and information for patients such as financial assistance and help in navigating clinical trials. Learn more. >>