CLL SOCIETY INC.

CLL Society Inc. is a nonprofit 501(c) (3) organization focused on education and support for chronic lymphocytic leukemia (CLL) patients shaping a smarter, brighter future for those with CLL by encouraging and supporting smart patients, providers, clinical trials, research, healthcare delivery systems, and therapies in a rapidly changing therapeutic landscape.

Our aim is to address the unmet needs of the CLL community in terms of education, support, advocacy and research, empowering patients with the information and resources they need to advocate for their best possible care.

Working towards this goal within the next five years, we are continuing to grow our Medical Advisory Board and Patient Advisory Board, rebuilding our website so educational resources and support services are easy to navigate, and increasing advocacy and research efforts to address the unmet needs of our CLL community.

CLL Society offers CLL patients and their caregivers numerous ways and various methods to access education and support including live and virtual programs from leading global CLL experts, online resources, a national network of local support groups, the Expert Access™ no-cost second-opinion program, and more.

Our published, peer-reviewed research informs our efforts and the broader CLL community by surveying patients as to their concerns and unmet needs.

Our website content, educational materials, research and program design all model for healthcare providers, clinical trialists, researchers, payors, and healthcare delivery systems how the empowered “smart” patient is fundamental to achieving best possible outcomes.

CLL Society has made a commitment to incorporating the principles of Diversity, Equity, and Inclusion in all aspects of our organization and culture.

Brian Koffman, CLL Society’s Co-Founder, EVP and Chief Medical Officer, is a retired family physician, experienced medical educator, and CLL patient, who leads CLL Society in translating the science of CLL and its treatments into patient-friendly language so that each patient understands his or her condition, testing, treatment options, and available resources and is thus empowered to competently and confidently engage in dialogue and shared decision making with his or her health care team.

Our capabilities include a small but strong staff team with collective experience in health care, communications, education, technology, and nonprofit management. We are also fortunate to have a strong national network of volunteers, which includes informed patients, a highly engaged Board of Directors, a diverse Patient Advisory Board, and our prestigious Medical Advisory Board and Expert Medical Council, which include many of the leading experts in CLL.

CLL Society receives funding from a variety of pharmaceutical and corporate partners, as well as individual donors, many of whom have benefited from the services CLL Society provides.

CLL Society partners in various ways with multiple organizations nationally and internationally, including LLS, LRF, Lymphoma Coalition, Cancer Support Community, CLL Advocates Network (CLLAN) and many more, to minimize duplication of efforts and maximize the collective positive impact to the CLL community.

Since its launch in March 2015, the CLL Society’s website (cllsociety.org) averages 80,000 page views per month. In a 2019 survey, 52% of respondents reported that CLL Society is their primary source of information on CLL, and 10% of respondents reported that cllsociety.org is the only website they visit for information on CLL. These numbers demonstrate the value of the CLL Society to the patient community.

CLL Society will continue to innovate in the development and delivery of patient education and support programs. We will also promote novel therapies, and will partner with other organizations to invigorate its network.

Unmet Needs: CLL Society will leverage its resources and relationships to influence and/or participate in advocacy and research in four key areas of unmet needs in CLL:

1. Better therapies for Double Refractory Disease
2. Better therapies for Richter’s Transformation
3. Immune reconstitution
4. Time limited, potentially curative therapies

Sustainability: CLL Society will expand and diversify funding, expand and diversify its network of credible sources and contributors, build relationships with emerging stakeholders, continue development of its CRM, and develop succession plans to ensure we are strongly positioned to support patient needs into the future.