Dear Patient or Caregiver,
CLL Society is pleased to provide you with educational resources, and we invite you to learn more about us. CLL Society is dedicated to providing education and support to the CLL community with a focus on the needs of this population. Programs, resources, and services you might find helpful are listed below.
About The CLL Society
CLL Society’s mission as an inclusive, patient-centric, physician-curated nonprofit organization is to address the unmet needs of the chronic lymphocytic leukemia (CLL) community through patient education, advocacy, support, and research. CLL Society supports CLL patients, caregivers and healthcare providers by monitoring, reporting on, and explaining advances in the understanding of the underlying biology of CLL, emerging CLL research data, and the rapidly evolving CLL therapy options. Our motto is SMART PATIENTS GET SMART CARE™.
The CLL Society Website
The CLL Society website (https://cllsociety.org) is rich in educational content for CLL patients and caregivers. The goal of the website is to help you better understand chronic lymphocytic leukemia and to support you toward getting your best possible care through participation in shared decision making. Features include information for those who are newly diagnosed, relevant treatments, breaking research, clinical trials, educational programs, support groups, and more.
The CLL Society website has useful resources including the Ask the Experts section where people can ask general interest questions that do not require a long explanation or detailed review of the medical history. The section includes Ask the Doctor, Pharmacist, Laboratory Scientist, Palliative Care/Hospice Doctor, and Nurse.
The website has additional useful resources including a list of Normal Lab Values, Keeping Track of Lab Results, a CLL Glossary of Terms, and Abbreviations and Acronyms.
CLL Society’s Patient & Caregiver Support Groups
The CLL Society’s volunteer-led support groups provide CLL patients and their caregivers the opportunity to participate in face-to-face CLL-specific educational opportunities, as well as an opportunity to meet and connect with others sharing their diagnosis. During the coronavirus pandemic, all meetings have been transitioned to a virtual platform. CLL Society has operationalized almost 40 support groups in cities across the U.S. and two locations in Canada. Find out more about our support groups here.
CLL Society gathers, consolidates, analyzes, explains, and publishes key findings presented at the premiere CLL-related scientific conferences. Patients and caregivers who would normally not have access to such information are provided with on-demand access to videos featuring experts in CLL, as well as daily reports and articles, all meant to increase your awareness of the latest clinical advances, as well as the year’s most significant scientific discoveries and updates in CLL in a patient-friendly, easy-to-understand format. Find important research and treatment information here.
CLL Educational Programs
CLL Society produces many educational programs each year. There are different formats, including Ed Forums, which are approximately 120-minutes and include multiple CLL expert speakers and patient or caregiver perspectives on a range of important topics. The webinar format is approximately 60-minutes and features one or two expert speakers, with a moderator facilitating the session. Expert speakers share a brief introductory presentation and the last half of the program is reserved for audience Q&A. Virtual Community Meetings include approximately four speakers and the majority of the time is reserved for audience Q&A. Audience interaction is encouraged through advance question submission and live polling. All sessions are recorded and archived on the CLL Society website. Visit our website and sign up for Alerts to be notified of upcoming educational events.
Expert Access™ Program
Research supports that patients who have a CLL expert as part of their team live longer and experience better outcomes than those without this advantage. CLL Society recognizes that living far away from a CLL expert or insurance may be barriers to receiving expert care. The CLL Society Expert Access™ Program provides many such patients with a no-cost, 2nd opinion from a CLL expert physician via a HIPAA-compliant online video consultation. Apply now!
Test Before Treat™
CLL Society’s Test Before Treat™ Campaign raises awareness about the importance of testing before each treatment, to facilitate the patient and healthcare provider dialogue to empower patients to insist on testing. Resources include a one-page informational sheet about testing and red, double-sided Test Before Treat wristbands that serve as a reminder. Learn more here.
The CLL Toolkit is a comprehensive CLL resource, providing the latest options and facts about CLL. Reviewing this information can help open space for important questions, conversations, and decision making between CLL patients, their caregivers, and healthcare providers.
CLL Society conducts important research to better understand the patients’ and caregivers’ journey and to better inform health care providers about what matters most to patients. Our research has been presented at all the major hematology conferences. We are also in the process of developing a program to sponsor basic science and clinical research addressing the unmet needs of CLL patients.
We hope you find this information helpful, and we invite you to become a part of the CLL Society community. Reach out and contact us here.
Stay Strong… We are all in this together!