Dear Patient or Caregiver,
The CLL Society is pleased to have provided these educational resources and invites you to learn more about us. The CLL Society is exclusively dedicated to providing education and support to the CLL community. Programs, resources, and services you might find helpful are listed below.
About The CLL Society
CLL Society is an inclusive, patient-centric, physician-curated nonprofit organization that addresses the unmet needs of the chronic lymphocytic leukemia (CLL) community through patient education, advocacy, support, and research. CLL Society focuses on explaining advances in our understanding of the underlying biology and the rapidly changing therapy options, while supporting informed patients and their healthcare providers. Our goal is to develop real, recent and relevant education for patients and caregivers. 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 The Basics, Beyond the Basics, Living Well with CLL, Clinical Trials, News, and Conference Coverage.
The CLL Tribune
The CLL Tribune (https://cllsociety.org/the-cll-tribune-a-quarterly-newsletter/) is our quarterly online newsletter containing original material focused on clinical and supportive topics for CLL patients, conference coverage, as well as the latest CLL news. Additionally, the CLL Tribune sports the very popular Ask the Doctor, Ask the Pharmacist, and Ask the Laboratory Scientist sections. Quarterly Reader Polls gather information and feedback from patients on important topics which can inform the CLL Society’s future offerings, as well as the healthcare and pharmaceutical industries in order to better meet the needs of the CLL community.
Patient & Caregiver Support Groups
The CLL Society’s local, live, 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 cultivate camaraderie with others sharing their diagnosis. 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 at https://cllsociety.org/newly-forming-cll-specific- patient-support-groups/.
Patient Educational Forums
The CLL Society hosts approximately 12 in-depth, half-day Patient Educational Forums throughout the US annually, providing scheduled opportunities for CLL education, peer support, up-to-date information on established and novel therapies and clinical trials, as well as an awareness of the importance of patients becoming well informed. Forums are scheduled in alignment with the Annual American Society of Hematology (ASH) Meeting to ensure that the most up-to-date information is being made available. Upcoming forums are listed on our website: https://cllsociety.org/upcoming- cll-patient-education-programs/.
The 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. https://cllsociety.org/conference-coverage/.
The CLL Society produces quarterly 60-minute webinars featuring the theme Living Well With CLL. Each webinar features different experts, with a moderator facilitating the session. The experts share a brief introductory presentation and the last half of the webinar is reserved for audience Q&A. Audience interaction is encouraged through advance question submission and live polling. All sessions will be recorded and archived on the CLL Society website. Visit our website and sign up for Alerts to be notified of upcoming webinars.
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. The CLL Society recognizes that the limitations of geographic location or insurance may be barriers. The CLL Society Expert Access™ Program provides many such patients with a no-cost 2nd opinion from a CLL expert via a HIPAA-compliant online video consultation. https://cllsociety.org/cll-society-expert-access/
The CLL Toolkit is a comprehensive CLL resource for your health care provider, providing the latest options and facts about CLL, while facilitating meaningful dialogue and decision making with CLL patients and caregivers.
The CLL Society conducts important research to better understand the patients’ and caregivers’ journey and to better inform doctors about what matters most to patients. Our research has been presented at all the major hematology conferences. We are also making plans 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. Visit our website or reach out at https://cllsociety.org/contact-us/.
Stay Strong… We are all in this together!