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NATIONAL COALITION FOR CANCER SURVIVORSHIP Organization Name provided in the GuideStar Exchange* as of 11/24/2013: NATIONAL COALITION FOR CANCER SURVIVORSHIP

Organization Name as listed in the IRS Business Master File as of 08/11/2014: NATIONAL COALITION FOR CANCER SURVIVORSHIP

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AKA  Cancer Survivors Coalition (NCCS)
Silver Spring, MD
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GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
&1002; Evidence of Impact Expert Assessment and Reviews available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

NATIONAL COALITION FOR CANCER SURVIVORSHIP Organization Name provided in the GuideStar Exchange* as of 11/24/2013: NATIONAL COALITION FOR CANCER SURVIVORSHIP

Organization Name as listed in the IRS Business Master File as of 08/11/2014: NATIONAL COALITION FOR CANCER SURVIVORSHIP

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: Cancer Survivors Coalition (NCCS)
Physical Address: Silver Spring, MD 20910 9127
EIN: 85-0357897
Web URL: www.canceradvocacy.org 
Blog URL: www.canceradvocacy.org/category/news/ 
NTEE Category: G Disease, Disorders, Medical Disciplines
G30 Cancer
E Health—General & Rehabilitative
E01 Alliance/Advocacy Organizations
W Public, Society Benefit
W01 Alliance/Advocacy Organizations
Year Founded: 1986 
Ruling Year: 1997 


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Mission Statement

NCCS’s mission is to advocate for quality cancer care for all people touched by cancer.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (IRS Form 990, January 2012)

Fiscal Year Starting: January 01, 2012
Fiscal Year Ending: December 31, 2012

Total Revenue $1,705,168
Total Expenses $2,356,041

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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November 2013)

Mrs. Shelley Fuld Nasso

Profile:

As Chief Executive Officer, Shelley has responsibility for managing all facets of NCCS, including planning and executing the public policy activities of the organization. Shelley joined NCCS in December 2012 as a consultant and in March 2013 as Senior Director of Policy before her appointment as CEO in October 2013. Prior to joining NCCS, Shelley served in leadership roles at Susan G. Komen, where she leveraged the strength of Komen’s grassroots network to strengthen the organization’s reputation and visibility in Washington, D.C., and in state capitals. There she built productive relationships with key policymakers, agencies, coalitions and partner organizations and led a team of advocacy and volunteer leaders to influence state budgets and legislation. Under her leadership, Komen successfully secured $80 million in state funding for cancer screening and treatment for uninsured and under-insured women. She and her team also expanded the Komen grassroots advocacy program expanded from a pilot of seven affiliates to more than 100 affiliates across the country engaged in federal and state advocacy efforts. Shelley has also served as Director of Community Philanthropy at The Dallas Foundation and held management positions at communications and technology enterprises. She is a graduate of Rice University and holds a Master of Public Policy from the Harvard Kennedy School. Shelley’s commitment to the work of NCCS is strongly tied to the experiences in the cancer care system of her dear friend, Dr. Brent Whitworth, a beloved physician diagnosed with stage IV cancer days before his 42nd birthday. Through Brent’s battle, Shelley witnessed the strengths and flaws of the cancer care system and embraces the notion that policy change can directly benefit patients and caregivers going through this journey.

Leadership Statement:

More than 25 years ago NCCS pioneered the term "cancer survivor" and began working towards addressing the many issues that accompany a cancer diagnosis. Today, we continue this work on behalf of all people impacted by cancer, as the number of cancer survivors in the United States continues to grow. Improving the quality of cancer care is a critical priority not only for those living with, through, and beyond a cancer diagnosis, but the caregivers, health care professionals, and loved ones who are also struggling with the complexities of this illness. In many ways and through many channels, NCCS speaks up for cancer survivors to ensure they receive the quality care they deserve. In the face of new opportunities and with great hope, we continue to push forward until this goal of quality cancer care for all is realized. Thanks to our advocates, individual donors, corporate sponsors, Board of Directors and dedicated NCCS Staff for their support.

Board Chair (GuideStar Exchange,
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November 2013)

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November 2013)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in November 2013

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Programs

Program: Cancer Survival Toolbox (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified
Adults
Aging/Elderly/Senior Citizens

Program Description:

Since 1986, NCCS has worked collaboratively in pursuit of our mission to advocate for quality cancer care for all Americans and to provide tools that empower people affected by cancer to advocate for themselves.  Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and considers someone a cancer survivor from the time of diagnosis through the balance of life. It is only with the support of organizations like yours that we are able to advance the voice of survivors and their loved ones.   NCCS is known as a convener of diverse groups throughout the cancer community and the broader healthcare arena. A prime example of our collaborative success is the formation of the Cancer Leadership Council (CLC), by NCCS in 1993, which now includes 34 leading cancer research, support and advocacy organizations. The CLC meets monthly to consider issues that affect the quality of research and the quality of care for people diagnosed with cancer. Other collaborations have included our Cancer Policy Roundtables, a bi-annual policy forum, and our partnership with the American Society of Clinical Oncology (ASCO) in co-chairing the Cancer Quality Alliance (CQA). NCCS is proud of its track record as an honest broker of patient-centered education and advocacy to inform science, regulatory, and health policies related to cancer. Our relationship with some of the nation’s most respected health thought leaders and policymakers enables NCCS to carry out its important work. ® There are nearly 12 million cancer survivors in this country and each year 1.5 million people are newly diagnosed. NCCS is dedicated to improving the lives of people living with, through, and beyond a cancer diagnosis. Our work helps cancer survivors receive the care they deserve by providing information and educational resources to help them become better self-advocates.  Educated patients can receive optimal care by making their needs known to their doctors, care teams, health plans, and elected officials. The Toolbox was developed by survivors, social workers, and nurses, and represents a unique collaboration of the National Coalition for Cancer Survivorship, the Association of Oncology Social Work (AOSW), the Oncology Nursing Society (ONS), and the National Association of Social Workers (NASW). The Toolbox is a free, award-winning self-learning audio program that has been used by hundreds of thousands of listeners over the last ten years. The Toolbox addresses vital issues such as communicating with your doctors, finding information, advocating, topics for older persons, clinical trials, paying for care, and tips for caregivers.In 2009, the Toolbox received two National Health Information Awards, which recognize the nation's best consumer health information programs and materials. Both winning entries, the Toolbox and the Toolbox’s Multiple Myeloma Module, received the highest award given in each category and were selected from more than 1,000 entries judged by a national panel of health information experts.  NCCS also received a 2009 Web Health Award for the Toolbox microsite within our Web site. The microsite received the highest honor in the Community Organization Division in the Patient Education Class. Available in both English and Spanish, this resource is revised regularly, evaluated, and updated by a team of healthcare professionals and advocates, known as the Toolbox Team. In 2008, two new modules, First Steps for the Newly Diagnosed and Dying Well – The Final Stages of Survivorship were added in response to the needs of survivors identified by the cancer community. In 2009, two new modules were introduced to address the needs of survivors diagnosed with multiple myeloma and lymphoma. And in 2010, a new module will be added to educate those who have been diagnosed with leukemia. The Cancer Survival Toolbox is also available free on iTunes® as well as the NCCS Web site www.canceradvocacy.org/toolbox(http://www.canceradvocacy.org/toolbox) .

Program Long-Term Success:

NCCS programs can be utilized to improve patient education, quality cancer care, and access to information. NCCS continues to expand its resources by focusing on new and different modules to help address emerging issues of the cancer survivor populations. The successful implementation of this program will result in efforts to increase awareness of support services and education materials as well.     NCCS believes that the input of survivors will inform both how the current Toolbox meets their needs as well as what content need to be developed in the new modules. Some risks and limitations of this project are having current and substitutive information. We will seek this information from survivors during focus groups, and we will select interested survivors from each of the groups to listen to the current modules with an eye to content needed in the new modules. The team will develop specific evaluation questions on a Likert scale about each module and will ask the survivors to rate the quality of the current information. Additionally the evaluation will address other characteristics of the Toolbox such as module length, ease of use, value to family members etc. This information will be utilized to shape the disease-specific toolbox. As the Toolbox team updates older modules these findings will help guide revisions.

Program Short-Term Success:

NCCS is working to continue to produce and distribute 50,000 copies of the Cancer Survival Toolbox to cancer survivors, caregivers, family members, cancer centers and support groups across the country in the next year.

Program Success Monitored by:

It is important to educate and empower the 12 million cancer survivors in the country. The Toolbox has shown to be successful in doing just that, for there has been high demand and overwhelming praise for this resource. Through its 20 year history and multifaceted relationships in the cancer community, NCCS has garnered an enormous amount of credibility. The future success of our programs is bright as we continue to diversify our funding. A mix of corporations, foundations, and individual donators will allow us to continue with the proposed project beyond the completion of Amgen funding. NCCS is poised as an organization to maximize our efforts to ensure quality cancer care for all Americans.

Program Success Examples:

"Publications and CDs from NCCS address essential areas like how to handle your emotions, make the most of doctor visits, deal with insurance companies, make difficult decisions about treatment choices, and address quality-of-life issues. There is support information for caregivers and lists of resources, too." - Breast Cancer Survivor  In 2009, the Toolbox received two National Health Information Awards, which recognize the nation's best consumer health information programs and materials. Both winning entries, the Toolbox and the Toolbox’s Multiple Myeloma Module, received the highest award given in each category and were selected from more than 1,000 entries judged by a national panel of health information experts.  NCCS also received a 2009 Web Health Award for the Toolbox microsite within our Web site. The microsite received the highest honor in the Community Organization Division in the Patient Education Class.

Program: Journey Forward (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

Journey Forward, a combined effort of NCCS, WellPoint, Inc., the UCLA Cancer Survivorship Center and Genentech – launched in February 2009 in five pilot states for survivors of breast and colon cancers and will later include plans for survivors of other cancer types throughout the country.   The program promotes the use of treatment summaries and follow-up plans that give clear steps for care and monitoring after active cancer treatment.  Journey Forward’s custom-made Survivorship Care Plan Builder(http://www.journeyforward.org/professionals/survivorship-care-plan-builder.htm) is available for use by any oncologist.  In addition, Journey Forward offers an electronic Medical History Builder(http://www.journeyforward.org/patients/medical-history-builder.htm) where patients can record their health history in a format that makes changes easy and avoids the need to fill out medical history forms repeatedly. Cancer changes a person’s healthcare needs forever, and NCCS believes every person with cancer should receive written care plans and summaries that follows them from the time they are diagnosed through all their years of their survivorshimonitor their health, and participate in decisions about their future care – not just their cancer treatment and its side effects, but also their social and emotional needs. Cancer care plans are an essential component of quality cancer care(http://www.canceradvocacy.org/take-action/nccs-policy/quality-care.html) .   The Journey Forward program was inspired by recommendations in the Institute of Medicine’s (IOM) November 2005 report on adult cancer survivorship, “Lost in Transition: From Cancer Patient to Cancer Survivor,” which concluded that there is currently no system of coordinated follow-up care for cancer survivors in the United States. Upon completing treatment, many cancer survivors are left with questions, such as “What’s next? Who is in charge of my care now?  How do I know if my cancer returns?  What should I look for?  What should my other doctors know about my cancer?”

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: What Cancer Survivors Need to Know About Health Insurance (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
November 2013)

Budget:
--
Category:
Health Care
Population Served:
General Public/Unspecified

Program Description:

This book sorts through the insurance maze by explaining the many types of insurance, exploring ways cancer survivors can get the most out of their insurance coverage and discussing laws that provide some protection for cancer survivors changing jobs.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Teamwork: The Cancer Patient's Guide to Talking with Your Doctor (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

Developed by cancer survivors and health care professionals, this book addresses the need for good communication and provides a list of sound, practical questions that patients can use when talking with their doctor.

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Program Success Monitored by:

Program Success Examples:

Program: Working It Out: Your Employment Rights as a Cancer Survivor (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

Unfortunately, many cancer survivors experience workplace discrimination. In fact, one survey found that American workers with cancer are fired or laid off five times as often as other workers. This book addresses the employment challenges that many survivors face and offers advice and resources to address those challenges.

Program Long-Term Success:

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Impact Summary from the Nonprofit Additional Information
A Charting Impact Report consists of an organization’s responses to the five questions. Helping validate this self-reported data are three reviews. Once an organization has used the online interface to complete its report, its responses will produce a document with a unique URL that will be shared on this website, on your GuideStar profile, on the reports of charities participating in BBB Wise Giving Alliance evaluations, and – in the future – with other websites and information sources about nonprofits. We encourage organizations to use this URL to share their report on their own website and through their own media channels. Participants will receive guidance about promoting their Charting Impact Report, along with other benefits, once they publish their report.

NCCS’s vision is to be the most effective advocate at the federal level for quality cancer care for all people with cancer. Since 1986, NCCS has worked to advocate as the patient voice in national discussions related to quality cancer care. In 1993 NCCS convened other cancer advocacy groups to found the Cancer Leadership Council, a patient-centered forum of national advocacy organizations addressing public policy issues on cancer. NCCS published its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability in 1996, the first report to approach quality cancer care for the patient/survivor perspective. This report provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship. Other historical contributions include our work towards coverage of routine medical costs for Medicare beneficiaries enrolled in cancer clinical trials in 2000; a series of major IOM reports published from 2001-2007; our work towards Medicare coverage of oral chemotherapies from 2000-2003; membership in the Commission on Cancer (CoC) resulting in patient-centered CoC standards in 2010; and most recently our work towards the implementation of cancer care planning and coordination through our support of the 2013 Planning Actively for Cancer Treatment (PACT) Act (h.r. 2477). Believing that access to credible and accurate patient information is fundamental to understanding and receiving quality cancer care, NCCS has distributed approximately 40,000 free print and audio resources in 2012. In 2013. Our mobile iPhone app, "The Pocket Cancer Care Guide", is a free resource that facilitates communication between patients and doctors. We continue to work on the development of tools that encourage care planning, as well as outreach to educate health care professionals about care planning tools such as the Journey Forward program.
For more in-depth information about this organization's impact, view their Charting Impact Report.

Expert Assessment

The National Coalition for Cancer Survivorship has provided importnt services to cancer survivors and has also had a strong influence over policy issues. Read More »

Expert Reviews and Comments

2011 Philanthropedia Top Nonprofit

This organization is a 2011 Philanthropedia top nonprofit, recommended by experts as having high impact.

These expert reviews were generated through Philanthropedia's research methodology to identify high-impact nonprofits. Learn more

Evidence of Impact

The National Coalition for Cancer Survivorship has provided importnt services to cancer survivors and has also had a strong influence over policy issues.

Patient Empowerment
NCCS has been able to achieve their vision - empowering cancer patients to get more involved in their own and in their loved ones' care. The organization has taken it to the next level of getting involved in policy issues. Nonprofit Senior Staff
Great Influence on Policy
NCCS is known for its policy work. The organization serves as an important member of many alliances and collaborations, provides credible input representing the survivor voice for a variety of stakeholders, and is sought after by policymakers. NCCS is recognized as the expert on survivorship and quality care issues. Nonprofit Senior Staff
This organization is one of the best in terms of identifying and engaging in policy issues related to all types of cancer. They work effectively with other advocacy organization, government and corporations, and are usually one of the first to highlight important issues and facilitate public discussion and debate. Other
Wide Reach of Services
This group has a strong and inclusive mission statement. They have reached a large constituency and have connected them to resources and services. Nonprofit Senior Staff
Raise Awareness on Survivor Care Planning
They have helped to bring attention to survivor care planning. Nonprofit Senior Staff

Organizational Strengths

The major assets of this organization are its knowledgeable and dedicated leadership and its focus on education and advocacy.

Well-Informed Staff and Leadership
Ellen Stovall has been in the cancer community for a very long time and understands the nuances and complexities of cancer policy. That background serves the organization well as they move forward through future challenges. Nonprofit Senior Staff
The organization is led by survivors; its by-laws mandate that at least half of the board have had a personal diagnosis and several of the staff are survivors. The staff are also very well versed on policy issues on a tricky topic (quality care) that is difficult to understand. Nonprofit Senior Staff
Good Emphasis on Education and Advocacy
Their emphasis on education and advocacy is their greatest strength. They also have effective advocacy and strong leadership. Nonprofit Senior Staff
Great Educational Programs
They have an excellent staff and good quality educational capability and outreach to individuals as well as organizations. Other

Areas for Improvement

As noted by experts, the greatest challenge facing NCCS currently is the need for continuity in the face of leadership changes.

Higher Visibility
It can be difficult for the individual to really understand what NCCS does. On a policy level, there is a lot going on, but that is not necessarily communicated clearly and frequently. On an individual empowerment level, the tools and resources they've developed are exceptionally valuable, but few know of their existence. Nonprofit Senior Staff
Stable Leadership
NCCS could benefit from stable leadership and from having more staff who are able to participate in the quality cancer care discussion. Nonprofit Senior Staff
They could benefit from continuity: they have had recent high level staff changes. Nonprofit Senior Staff
They are currently experiencing leadership challenges with the resignation of the CEO, who had not been in place long. Other
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