CLL SOCIETY INC.

Smart Patients Get Smart Care

Olathe, KS   |  http://cllsociety.org

Mission

The CLL Society Inc. is a patient-centric, physician-curated, non-profit focused on patient education and support. Dedicated to addressing the unmet needs of the CLL and related blood cancer communities, it explains the rapidly changing therapeutic landscape, supports and builds patient networks, and educates providers.

Ruling year info

2014

EVP/CMO

Dr. Brian Koffman

Executive Director

Carly R Boos

Main address

P.O. Box 3197

Olathe, KS 66063 USA

Show more contact info

EIN

46-4131354

NTEE code info

Health Support Services (E60)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The CLL Society Inc. is a patient–centric, physician–curated nonprofit organization focused on patient education, support and research. Dedicated to addressing the unmet needs of the (CLL) chronic lymphocytic leukemia and related blood cancer communities, we explain the rapidly changing therapeutic landscape and the importance of clinical trials, support and build patient networks, engage in research and educate providers and patients.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

www.CLLSociety.org

The CLL Society website (https://cllsociety.org) launched in March 2015 and has had over 1,100,000 page views​ (now averaging >50,000 per month, up 30% from 2017, and 64% from 2016). We develop online educational content for CLL patients and their caregivers to help them better understand their disease and support them towards getting their best possible care through participation in shared decision-making, thus fulfilling our motto that "Smart Patients Get Smart Care.” Features include The Basics, Beyond the Basics, Living Well with CLL, Clinical Trials, News, and Conference Coverage.

Population(s) Served

The CLL Society’s Patient and Caregiver 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 Patient Support Groups are local, live, volunteer-led, CLL-specific support groups. As of November 2018, the CLL Society has operationalized over 25 support groups in cities across the U.S., led by CLL Society trained and accredited facilitators.

Population(s) Served

CLLS Patient Educational Forums provide scheduled opportunities for CLL education, peer support for patients and caregivers, as well as information exchange. These in-depth half-day educational forums provide patients with up-to-date information on established and novel therapies and clinical trials, as well as increase awareness of the importance of patients being well informed. The CLL Society plans and hosts about 12 Forums per year. Forums are scheduled in alignment with the annual ASH conference, to ensure that the most up-to-date information is available to patients.

Population(s) Served

In 2019, CLLS will produce quarterly 90-minute webinars with the theme of Living Well With CLL. Each webinar will feature different experts, with a moderator to facilitate the sessions. The experts will share a brief introductory presentation and the last hour will be reserved for Q&A and dialogue. Audience interaction is encouraged through advance question submission and live polling. All sessions will be recorded and archived on the CLL Society website in the Living Well with CLL section.

Population(s) Served

The CLL Tribune is our quarterly online newsletter containing original material focused on clinical and supportive topics for CLL patients and the latest CLL news. Quarterly Reader Polls gather information and feedback from patients on important topics in CLL. Additionally, it features the very popular sections, Ask the Doctor, Ask the Pharmacist, and Ask the Laboratory Scientist.

Population(s) Served

The CLL Toolkit provides health care providers with CLL-specific educational materials to supplement the education that is taking place verbally in their physician-patient dialogue. The Toolkit is housed in a binder format that provides hand-outs on topics of concern to CLL-patients and their caregivers. The pull-out sheet format increases the likelihood that the patient will receive time-sensitive relevant information at each stage of their illness.

Population(s) Served

The CLL Society believes that access to CLL expert care is critical for every patient to receive his or her best possible care and recognizes that factors such as geography or insurance limitations may be a barrier. Expert access connects individuals with CLL diagnoses to CLL experts via a HIPAA compliant online video consultation. Patients with a CLL expert as part of their team are proven to live longer and experience better outcomes than those without this advantage.  Along with our partner, InfiniteMD, the Expert Access Program allows the CLL Society to provide consultation services for 150 patients per year.

Population(s) Served

The objective of the CLL Society’s Test Before Treat Campaign is to raise awareness of the importance of testing before each treatment, facilitate patient-HCP dialogue to empower patients to insist on testing, and to create resources that will serve as reminders to patients to ask for testing before each treatment

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Related Program

www.CLLSociety.org

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Unique website visitors are measured monthly. The average number of unique website visitors per month in 2018 was 16,444. The average number of unique website visitors per month in 2019 was 20,160.

Number of list subscribers

This metric is no longer tracked.
Totals By Year
Related Program

The CLL Tribune Quarterly Newsletter

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These numbers represent patients and caregivers who have proactively subscribed to CLL Society's mailing list, which includes distribution of the CLL Society Weekly Alert & the Quarterly Tribune.

Number of participants who would recommend program to others

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Of the 3,333 participants in the 7 programs that asked this survey question, 3,207 (96%) indicated they would recommend the program to other CLL patients.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Related Program

CLL Society Patient Educational Forums

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This is the number of patients and caregivers who attended one of CLL Society's annual Patient & Caregiver Educational Forums.

Number of clients participating in support groups

This metric is no longer tracked.
Totals By Year
Related Program

CLL Society support groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This represents the membership of CLL Society's 35+ Support Groups in locations across the U.S. and Canada.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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, and a prestigious Medical Advisory Board which includes 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, including LLS, LRF, Lymphoma Coalition, CURE magazine, 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) has received over 2 million page-views, and now averages nearly 70,000 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.

Please insert info on growth of Support Groups, establishment of innovative initiatives such as Expert Access™ and Test Before Treat™, 7,300 signed up for our weekly Alerts, the Quarterly Tribune, as well as published research.

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Community meetings/Town halls,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

CLL SOCIETY INC.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

CLL SOCIETY INC.

Board of directors
as of 7/3/2020
SOURCE: Self-reported by organization
Board chair

Steven Bloom

CLL Society Inc.

Term: 2020 - 2022

Dr. Brian Koffman

CLL Society Inc.

Dr. John Pagel

Swedish Cancer Institute

Keith Watson

Practivist Investors Inc.

William Cunningham-Corso

Cunningham Development Company, Inc.

Robert Levis

Asia & Brazil Connections, Inc.

Sandra Bihlmeyer

National Association for Continuing Education

Steven Bloom

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No