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CLL Society: Building a Community for Chronic Lymphocytic Leukemia Patients and Care Partners

September 8, 2023

This blog post is from our organizational partner CLL Society, an inclusive, patient-centric, physician-curated 501(c)(3) nonprofit organization that addresses the unmet needs of the chronic lymphocytic leukemia and small lymphocytic lymphoma (CLL / SLL) community through patient education, advocacy, support, and research.

CLL Society is proud to be the world’s leading authority for chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) cancer patients and care partners. We believe that no individual diagnosed with CLL / SLL should go through the journey alone. CLL Society offers a variety of support programs and educational resources to empower individuals to find the best possible care for their cancer.

CLL Society Patient and Care Partner Support Groups

Almost 4,000 patients and care partners impacted by CLL are participating in one of CLL Society’s approximately 40 support groups meeting virtually on a monthly basis. Under the leadership of CLL Society-trained facilitators, support groups provide a welcoming and safe place for individuals to share with others their experiences, joys, anxieties, and what they have learned. CLL Society support groups are also a hub to educate people on CLL breaking news, cutting-edge research, and treatment options. We want everyone to come away from a meeting feeling more equipped to enter shared decision-making conversations with their healthcare team and make care management decisions.

CLL Society Educational Events

Each month CLL Society hosts a virtual education event to keep the CLL community informed about basic information regarding living with CLL as well as deep dives into specific topics. These online webinars give patients and care partners the chance to learn about CLL from top CLL healthcare providers. All events feature a Q&A portion and are recorded for on-demand viewing.

CLL Society’s upcoming webinar on September 27, 2023, will focus on how policy decisions impact those living with CLL / SLL and their access to affordable healthcare. All are welcome to join us for Why Policy Matters – Understanding How Your CLL / SLL Journey is Affected.

CLL Society Expert AccessTM Program

Receiving expert care for one’s CLL has been proven to lead to better health outcomes for patients. As a rare disease, finding a healthcare provider who is an expert in CLL is not always easy. CLL Society’s Expert AccessTM Program is an innovative program connecting anyone who has received a CLL diagnosis to an expert CLL healthcare provider. Through Expert AccessTM, patients receive a 30-minute second opinion video consultation with an expert who answers their questions and can provide recommendations about treatment that can be shared with their local healthcare team, at no cost.

Resources for CLL Patients and Care Partners

CLL is a complex and heterogeneous disease that develops differently in each person. At times, it can be hard to know what option is best when faced with making decisions. CLL Society provides a variety of resources for patients to help them navigate challenging decisions.

Before any treatment for CLL is started, it is critical to have predictive and prognostic testing done. The results of these tests can help determine which treatments are optimal and identify other treatments to avoid. CLL Society’s Test Before TreatTM resource educates individuals about what tests need to be done and when.

As a blood cancer, individuals with CLL will have routine blood tests. Tracking the trends of one’s blood tests over time can often yield a greater picture than any single test. CLL Society’s normal lab values and keeping track of CLL lab results resources can help patients and care partners learn more about their lab results and stay organized.

Start learning about chronic lymphocytic leukemia / small lymphocytic lymphoma (CLL / SLL) with CLL Society today.[/vc_column_text][/vc_column][/vc_row]

About Triage Cancer

Triage Cancer is a national, nonprofit providing free education to people diagnosed with cancer, caregivers, and health care professionals on cancer-related legal and practical issues. Through eventsmaterials, and resources, Triage Cancer is dedicated to helping people move beyond diagnosis.

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Monica Bryant
mb@triagecancer.org