CLL SOCIETY INC.

Smart Patients Get Smart Care

Chula Vista, CA   |  http://cllsociety.org

Mission

CLL Society is an inclusive, patient-centric, physician-curated 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.

Ruling year info

2014

EVP/CMO

Dr. Brian Koffman

Executive Director

Carly R Boos

Main address

1454 Melrose Avenue, Ste. 1-247

Chula Vista, CA 91911 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

Mission: 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. Vision: We envision a world in which the entire CLL community can equitably access quality education, support, and care, to lead healthier and richer lives.

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
People with diseases and illnesses
Caregivers

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
People with diseases and illnesses
Caregivers

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
People with diseases and illnesses
Caregivers

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
People with diseases and illnesses
Caregivers

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
People with diseases and illnesses
Caregivers

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
People with diseases and illnesses
Caregivers

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
People with diseases and illnesses
Caregivers

CLL Society's Ask the Expert Program allows CLL/SLL patients and caregivers to ask questions of general interest about their disease and receive answers. Questions are submitted by email and are confidentially sent to either an expert CLL Physician, Registered Nurse, Lab Scientist, or Hospice/Palliative Care Physician for a short reply. Ask the Expert is a service for educational purposes only and is not meant to render medical advice.

Population(s) Served
People with diseases and illnesses
Caregivers

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
Population(s) Served

People with diseases and illnesses

Related Program

www.CLLSociety.org

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Website visitors are tracked on a monthly basis. This metric provides the average number of unique website visitors each month.

Number of list subscribers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

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
Population(s) Served

People with diseases and illnesses

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Of the 9,339 participants in the 15 programs that asked this survey question, 98% indicated they would recommend the program to other CLL patients.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

CLL Society Patient Educational Forums

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of patients & caregivers who attended one of CLL Society's annual Patient & Caregiver Educational Forums. An additional 3,693 attended other CLL Society educational programs in 2021.

Number of clients participating in support groups

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

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 38 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.

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.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    CLL patients and their caregivers, as well as all other members of the CLL health care community.

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

    Electronic surveys (by email, tablet, etc.), Community meetings/Town halls, Patient Advisory Board,

  • 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, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Information we have gathered from our patient audience has significantly informed the topics we select for educational activities as well as the redesign of our website.

  • With whom is the organization sharing feedback?

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

  • How has asking for feedback from the people you serve changed your relationship?

    By allowing patients to have a strong voice in the decision making process we have strengthened the relationship between CLL Society and those we wish to serve.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    Getting broad and diverse participation,

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

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  • 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 04/28/2022
SOURCE: Self-reported by organization
Board chair

Steven Bloom

CLL Society Inc.

Term: 2020 - 2022

Dr. Brian Koffman

CLL Society Inc.

Keith Watson

Practivist Investors Inc.

Robert Levis

Asia & Brazil Connections, Inc.

Sandra Bihlmeyer

National Association for Continuing Education

Steven Bloom

Susan O'Brien

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

Organizational demographics

SOURCE: Self-reported; last updated 4/22/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 11/11/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.