National Osteoporosis Foundation

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National Osteoporosis Foundation

1232 22nd Street, NW, Washington, DC 20037

(202) 223-2226 (800) 231-4222

www.nof.org [1]

Established in 1984, the National Osteoporosis Foundation (NOF) is the nation’s leading voluntary health organization solely dedicated to osteoporosis and bone health.

NOF’s Vision: To make bone health a reality and a lifelong priority for all individuals

NOF’s Mission: To prevent osteoporosis, to promote lifelong bone health, to help improve the lives of those affected by osteoporosis and related fractures, and to find a cure.

NOF is committed to achieving our mission through programs of awareness, education and training, advocacy and research.


About Osteoporosis

Osteoporosis, or porous bone, is a disease characterized by low bone mass and structural deterioration of bone tissue, leading to bone fragility and an increased susceptibility to fractures, especially of the hip, spine or wrist, although any bone can be affected.


According to NOF prevalence estimates and reinforced in Bone Health and Osteoporosis: A Report of the Surgeon General, osteoporosis is a major public health threat for an estimated 44 million Americans, or 55 percent of the people 50 years of age and older.


In the United States today, 10 million individuals are estimated to already have the disease. Almost 34 million more people are estimated to have low bone mass, placing them at increased risk for osteoporosis. Of the 10 million Americans estimated to have osteoporosis, eight million are women and two million are men. One in two women and one in four men age 50 and older will have an osteoporosis-related fracture in her or his lifetime.


NOF’s Education Programs

NOF provides a breadth of information, services, and educational and outreach initiatives to help thousands of patients, families, and health professionals throughout the country make informed decisions about preventing, diagnosing, treating and living with osteoporosis.


Patient and Public Education

• NOF offers free access to osteoporosis prevention, diagnosis and treatment information and responds to thousands of health information requests from individuals and health professionals. Each call, email and letter is addressed by a registered nurse and information appropriate to the request is provided.

• NOF publishes the Osteoporosis Report newsletter—a quarterly publication for patients and the general public interested in learning more about osteoporosis and bone health. The newsletter features the latest news and updates as well as calcium-rich recipes and tips on lifestyle and bone-healthy behaviors.

To learn how you can receive the Osteoporosis Report newsletter, please visit [2].

• NOF has two exciting programs to provide people affected by osteoporosis with the support they need to successfully cope with the disease. The first is Building Strength Together® (BST)—a network of osteoporosis support groups created to help people affected by osteoporosis start or join an NOF support group in their community. Through BST, people affected by osteoporosis are provided with, at no cost, local access to timely information and support in environments where they feel comfortable expressing their feelings, concerns and needs.

• The second program is called Linking Up. NOF created the Linking Up program for people who are unable to participate in one of NOF’s Building Strength Together® support groups. Linking Up is a virtual support group and upon enrollment, members can contact each other by phone, fax, mail or email to share their stories and to support each other as they live with osteoporosis. Groups are available for younger women, older women and men.

To join and NOF support group or learn more about these programs, visit [3].


Health Professional Education:

• NOF produces the Osteoporosis: Clinical Updates newsletter, which serves as a resource on current topics related to osteoporosis.

• NOF provides continuing medical education for physicians and is accredited by the Accreditation Council for Continuing Medical Education®. CME opportunities for learning are offered at [4].

• NOF’s International Symposium on Osteoporosis (ISO) is the only scientific meeting with 100 percent focus on the prevention, diagnosis and treatment of osteoporosis. The ISO provides a forum for leaders in the field to present their research, exchange ideas and interact with their colleagues and industry counterparts. The goal of the ISO is to update physicians, nurses and allied healthcare providers with the most current and clinically relevant information on osteoporosis prevention, diagnosis and treatment.

NOF’s 7th International Symposium on Osteoporosis: Translating Research into Clinical Practice will be held April 18 – 22, 2007 at the Marriott Wardman Hotel in Washington, DC.

• NOF’s Professional Partner Network® is a national network of health professional members that shares information about the new advances in osteoporosis prevention, diagnosis and treatment with free subscriptions to NOF's peer-reviewed journal, Osteoporosis International, published in collaboration with the International Osteoporosis Foundation. All members receive discounts on patient education materials and continuing medical education activities sponsored by NOF—benefits that help them stay current and provide quality services to their communities and patients. Visit [5] for more details.


NOF’s Awareness and Outreach Programs

NOF reaches out to women and men of all ages and backgrounds, including osteoporosis patients, families, health professionals, members of the media and the general public, to increase awareness of the prevalence and scope of the disease.

• Osteoporosis Awareness and Prevention Month: Each year, NOF creates and distributes campaign materials to its grassroots network of health professionals and patient support groups as well as corporate partners, medical associations and community groups. With this campaign, NOF is working to increase awareness of osteoporosis and bone health across the country.

• Strong Women Stand Tall™ Program: Strong Women Stand Tall™ is a program that celebrates women for the inner and outer strength they possess and recognizes the strength they give to one another, their families and their communities. It is a rallying cry for women – mothers, daughters and granddaughters – to join together and take action to protect their bone health. Strong Women Stand Tall™ reinforces to women everywhere that reducing risk for this disease is a lifelong process – it is never too early or too late to protect bone health. Physical activity, healthful eating and taking time to care for oneself – mind, body and spirit – are all healthy lifestyle choices that can reduce the risk of osteoporosis! To learn more about the Strong Women Stand Tall Program or how to get involved, visit www.strongwomenstandtall.org [6].


Special Events

• NOF’s Silhouette Ball: NOF hosts a Silhouette Ball every year to recognize those who are strong advocates for osteoporosis awareness. NOF has recognized a number of people over the years, including philanthropists, policymakers, researchers and scientists, government leaders, authors and actors.


Previous honorees include:

• Her Royal Highness The Duchess of Cornwall - President of the National Osteoporosis Society

• Vice Admiral Richard H. Carmona, M.D., M.P.H., F.A.C.S., U.S. Surgeon General

• Joan Rivers (NOF Ambassador)

• The Honorable Ann Richards

• Ethel LeFrak

• The Honorable Paul G. Rogers (NOF Founding Chairman)

• Richard U. Levine, M.D.

• The Honorable Tommy G. Thompson

• Jill Eikenberry

• Michael Tucker


NOF’s Research Programs

Research is the cornerstone for advancing our understanding of osteoporosis and our ability to combat all aspects of the disease, and ultimately for finding a cure.

• Research Grants Program: Through NOF’s peer-reviewed Research Grants Program, NOF funds and supports researchers at the beginning or at early stages of their scientific careers with seed grants.

To learn more about NOF’s Research Grants Program, visit [7].


NOF’s Advocacy Efforts and Public Policy Programs

NOF works to expand governmental support of osteoporosis research and quality patient care at the federal and state levels with efforts that include:

• Providing analysis, evaluation, and recommendations to federal and state bodies and policy organizations on a number of topics, including the Medicare Prescription Drug Benefit Draft Model Guidelines, Medicare Vertebral Fracture Assessment (VFA) reimbursement, state Medicaid formularies, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases long-range planning.

• Reaching out to Members of Congress to introduce and support legislation linked to improving education, providing increased preventive services, and ensuring and expanding health insurance coverage for those either at risk or with osteoporosis

• To build an advocacy network on bone health and osteoporosis legislative issues, NOF has established an ongoing grassroots campaign called the Bone Health Advocate Program. The Bone Health Advocate Program assists individuals affected by osteoporosis from around the country in communicating with organizations and individuals in their area to make osteoporosis issues a priority for state and federal lawmakers.

To learn more about the Bone Health Advocate Program, visit [8].


The National Institutes of Health Osteoporosis and Related Bone Diseases ~ National Resource Center

• The NIH Osteoporosis and Related Bone Diseases ~ National Resource Center, established and operated by NOF since 1994, is funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) with additional contributions from the National Institute of Child Health and Human Development, National Institute of Dental and Craniofacial Research, National Institute of Diabetes and Digestive and Kidney Diseases, NIH Office of Research on Women’s Health, DHHS Office on Women’s Health, and National Institute on Aging.

• The Center’s mission is to provide patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases, with a special focus on reaching out to traditionally underserved populations.

• The National Resource Center raises awareness of medical conditions that can increase the risk of osteoporosis – often among men, younger adults, and people of diverse races and ethnicities who are otherwise at lower risk. The Center promotes materials to people with these conditions and, through direct mail programs and exhibits at medical meetings, encourages doctors to use them as patient handouts.


BOARD OF TRUSTEES

The following individuals serve as NOF’s Board of Trustees (as of January 2007).

• Chairman Hon. Daniel A. Mica Credit Union National Association

• President Ethel S. Siris, M.D. College of Physicians and Surgeons, Columbia University

• Vice President Robert R. Recker, M.D. Creighton University

• Secretary Thomas A. Einhorn, M.D. Boston University School of Medicine

• Treasurer Wesley D. Tate Morgan Stanley

• Founding Chairman Hon. Paul G. Rogers Hogan & Hartson


MEMBERS (as of January 2007)

• William L. Ashton University of Sciences in Philadelphia

• Judy A. Black Brownstein Hyatt & Farber

• Yank D. Coble, Jr., M.D. World Medical Association

• Bess Dawson-Hughes, M.D. Tufts University

• Robert F. Gagel, M.D. MD Anderson Cancer Center

• Deborah T. Gold, Ph. D. Duke University Medical Center

• Barbara Levin National Health Advocate

• C. Conrad Johnston, Jr., M.D. Indiana University School of Medicine

• Michael Kleerekoper, M.D. St. Joseph Mercy Hospital

• Kathleen S. Kuntzman American Medical Association (Ret.)

• Robert Lindsay, M.D., Ph. D. Helen Hayes Hospital

• Gregory R. Mundy, M.D. Vanderbilt Center of Bone Biology

• Rita E. Norton AmerisourceBergen Corporation

• Eric S. Orwoll, M.D. Oregon Health & Science University

• Lawrence G. Raisz, M.D. University of Connecticut Health Center

• Carol Saline Philadelphia Magazine

• Rina Spence SpenceCare International LLC

• Mrs. Potter (Mary Ann) Stewart National Health Advocate

• Judith A. Thomas The Riverside Group

• Connie M. Weaver, Ph. D. Purdue University


EMERITUS BOARD (as of January 2007)

• William A. Peck, MD

• Charles H. Chesnut III, MD, FACP

• Robert P. Heaney, MD

• L. Joseph Melton, III, MD

• B. Lawrence Riggs, MD

• Paula H. Stern, PhD


EXECUTIVE DIRECTOR and CEO (as of January 2007)

• Leo Schargorodski


NOF’s Interspeciatly Medical Council

• NOF’s Interspecialty Medical Council (IMC), a group of 18 leading medical associations representing more than 600,000 physicians, provides diverse and important perspective on issues of common concern around osteoporosis and bone health relating to professional practice, education and public policy, among others.


IMC members include:

American Academy of Orthopaedic Surgeons

American Academy of Pain Medicine

American Academy of Pediatrics

American Academy of Physical Medicine and Rehabilitation

American Association of Clinical Endocrinologists

American College of Obstetricians and Gynecologists

American College of Physicians

American College of Radiology

American College of Rheumatology

American Geriatrics Society

American Medical Association

American Orthopedic Association

American Osteopathic Association

American Society for Bone and Mineral Research

International Society for Clinical Densitometry

International Society of Physical and Rehabilitation Medicine

National Medical Association

The Endocrine Society

The Founding of the National Osteoporosis Foundation


In April 1984, the National Institutes of Health held a Consensus Development Conference on Osteoporosis (see below for more information). The conference panel was led by William A. Peck, MD. Dr. Peck currently serves as Director, Center for Health Policy and Distinguished Professor of Medicine at the Washington University in St. Louis. In 1984, he was serving as Simon Professor, Washington University School of Medicine and Physician-in-Chief, The Jewish Hospital of St. Louis. The consensus panel included medical representatives of orthopedics, endocrinology, gynecology, rheumatology, epidemiology, nutrition, biochemistry, family medicine, and the general public. The panel considered current scientific knowledge on osteoporosis and agreed on answers to the following key questions:

• What is osteoporosis?

• What are the clinical features of osteoporosis, and how is it detected?

• Who is at risk for developing osteoporosis?

• What are the possible causes of osteoporosis?

• How can osteoporosis be prevented and treated?

• What are the directions for future research?

At the conclusion of the NIH Consensus Conference, a press briefing attended by representatives of the print and broadcast media was held. In the ensuing months there were numerous articles, newspaper stories, and television programs related to the findings announced by the consensus panel. As a result, major academic health centers nationwide received thousands of calls from patients and physicians alike who asked for more information on optimum approaches to the prevention and treatment of osteoporosis.


This activity led to a decision by Dr. Peck, a past president of the American Society of Bone and Mineral Research, to call a meeting of leading researchers in the field of osteoporosis to discuss the overwhelming public and professional interest in the disease, and to offer a strategy for responding to this broad interest. The result of this meeting led, in December 1984, to the establishment of The Osteoporosis Foundation, a national nonprofit voluntary health organization solely dedicated to osteoporosis and bone health. The organization was renamed the National Osteoporosis Foundation (NOF) in 1985.


The founding trustees recognized that scientists needed to be on the board to provide critical leadership in this arena. In 1985, they also made the decision to structure the voluntary board to include broad-based representation as well. One of the first steps they made in this direction was to appoint a chair. The individual they nominated, and who accepted this role, was the Honorable Paul G. Rogers. Mr. Rogers had served in Congress for 24 years, and for eight of those years was the Chairman of the House Subcommittee on Health and Environment. Virtually every major piece of landmark health legislation bears the Rogers name. He was instrumental in helping to enact the National Arthritis Act, The Research on Aging Act, The National Cancer Act, The Clean Air Act, The Safe Drinking Water Act, and helped to establish the National Institute on Aging of the National Institutes of Health.


In 1986, NOF established its offices in Washington DC, hired its first full-time executive director, Sandra Raymond, and developed the following mission statement:


The National Osteoporosis Foundation is dedicated to reducing the widespread prevalence of osteoporosis and is leading the attack on osteoporosis with a five-part mission to:

• Advocate governmental support for research on osteoporosis,

• Provide direct support for research and research training,

• Increase public awareness and knowledge about osteoporosis,

• Educate physicians and other health professionals,

• Provide information to patients and their families.

Compared to many of the other voluntary health agencies established earlier in the 1900s, NOF is still a young organization. However, in its two decades of operation, NOF has made strong strides in advancing osteoporosis awareness, education, research and advocacy.


As the significant osteoporosis milestones identified below highlight, NOF has spearheaded or been integral in efforts covering a wide spectrum and include serving as a resource to the public, healthcare professionals, the media and the government.


Milestones in Osteoporosis (1984 – present) Include:

1984

• April 1984, first NIH Consensus Development Conference on Osteoporosis is conducted. • December 1984, The Osteoporosis Foundation is formed (name changed to National Osteoporosis Foundation in 1985).

1985

• A bill calling for the first National Osteoporosis Prevention Week in May is passed in Congress. NOF develops and disseminates materials for the week. NOF now coordinates efforts related to Osteoporosis Awareness and Prevention Month recognized in May. • NOF establishes a Scientific Advisory Board (now known as Scientific Advisory Council (SAC)) to advise NOF on matters relating to research, scientific developments and educational programs and materials relevant to the concerns of the Foundation.

1986

• The National Institute for Arthritis, Musculoskeletal and Skin Disease (NIAMS) is established as an institute of the National Institutes of Health (NIH). Its focus includes leading efforts to conduct and support basic, clinical and epidemiologic studies on the causes, diagnosis, treatment and prevention of osteoporosis and related bone diseases. • NOF begins operation in Washington, DC.

1988

• The NOF Scientific Advisory Board submits a report, Clinical Indications for Bone Mass Measurements, to the Health Care Financing Administration in November. The report is published a year later in the Journal of Bone and Mineral Research.

1990

• NOF, in partnership with the International Osteoporosis Foundation, began publishing Osteoporosis International, a monthly, scientific journal dedicated to the diagnosis, treatment and management of osteoporosis.

1991

• The Department of Health and Human Services (DHHS) publishes Osteoporosis Research, Education and Health Promotion, a detailed review of its activities directed at reducing the prevalence of osteoporosis, in response to a directive of the US Senate Appropriations Committee.

1993

• NOF creates and begins promoting the adoption of model state laws for osteoporosis prevention and treatment education programs and coverage of bone mineral density testing. More than 30 states have passed these laws. Over time, NOF has updated these model state laws, most recently in 2005.

1994

• NIAMS awards a grant to the NOF to establish the National Institutes of Health Osteoporosis and Related Bone Diseases ~ National Resource Center in partnership with The Paget Foundation and Osteogenesis Imperfecta Foundation. The NIH National Resource Center’s mission is to expand awareness and enhance knowledge and understanding of the prevention, early detection, and treatment of osteoporosis and related bone diseases. • Working with NOF, the Office of Technology Assessment (OTA) evaluates the impact of osteoporosis in the US and gaps in research, public and professional education and the cost effectiveness of bone density tests. The resulting reports, Public Information About Osteoporosis: What’s Available, What’s Needed and Hip Fractures: Outcomes in People Age Fifty and Over, are released in October 1994.

1995

• NOF establishes the Interspecialty Medical Council (IMC) to provide a diverse and important perspective on issues of common concern around osteoporosis and bone health relating to professional practice, education and public policy, among others. • NIH announces commencement of the Women’s Health Initiative (WHI), the largest study of its kind, to track the health of 160,000 women of various racial and ethnic backgrounds. One of three major focus areas is the connection between calcium/Vitamin D and bone fractures.

1996

• Led by NIAMS, The Federal Working Group on Bone Diseases is created to enhance communication and coordinate research efforts in bone diseases among NIH Institutes and other Federal agencies.

1997

• NOF publishes its first prevalence report.

1998

• NOF publishes clinical practice guidelines, The Prevention and Treatment of Osteoporosis, which were endorsed by the majority of the IMC members, including: American Academy of Physical Medicine and Rehabilitation, American Association of Clinical Endocrinologists, American College of Obstetricians and Gynecologists, American College of Radiology, American College of Rheumatology, American Geriatrics Society, American Society of Internal Medicine, American Society for Bone and Mineral Research and the Endocrine Society. • The Medicare Bone Mass Measurement Coverage Standardization Act goes into effect, giving women and men age 65 and older who are at risk for osteoporosis access to this diagnostic test. • NOF leads the effort to secure $3 million for the first phase of a multi-million dollar National Bone Health Campaign aimed at girls ages 9-12 and their parents. Campaign partners include the DHHS Office of Women’s Health, Centers for Disease Control and Prevention (CDC) and NOF.

2000

• The second NIH Consensus Development Conference on Osteoporosis is conducted in March. • NOF led efforts to produce an “osteoporosis section” in Healthy People 2010, the nation’s blueprint for public health policy and programs. There are several objectives that relate to osteoporosis prevention and treatment in this and other sections. Among these objectives are reducing the proportion of adults with osteoporosis; reducing the proportion of adults who are hospitalized for vertebral fractures associated with osteoporosis; and reducing hip fractures among older adults.

2001

• The National Coalition for Osteoporosis and Related Bone Diseases (NOF, American Society for Bone and Mineral Research, Paget’s Foundation and Osteogenesis Imperfecta) initiated dialogue regarding support for a Surgeon General’s Report on Osteoporosis and Bone Health. Efforts were successful and in December, funding was designated for the Surgeon General's report in the Labor, Health and Human Services, Education and Related Agencies Fiscal Year 2002 Appropriations Bill.

2002

• NOF publishes, “America's Bone Health: The State of Osteoporosis and Low Bone Mass In Our Nation,” as an update to its first prevalence report. Leading experts estimate prevalence based on 2000 Census data and the National Health and Nutrition Examination Survey III (NHANES), 1988-1994. Prevalence estimates were presented for 2002, 2010 and 2020 for women and men aged fifty and older. Statistics were also broken out by Congressional district and major metropolitan areas. NOF’s prevalence data was cited in the Surgeon General’s Report (see below). • The Surgeon General’s report process was launched at a workshop held in December, 2002 to identify the most important issues in bone health. • The US Preventative Services Task Force releases a recommendation that follows NOF guidance and recommends that women aged 65+ have a bone density test.

2003

• Since the early 1990s, NOF has been recommending, commenting and monitoring the process of the National Committee on Quality Assurance (NCQA) to produce a Health Employer Data Information System (HEDIS) osteoporosis measure. In 2003, NCQA released a new HEDIS measure for 2004 that estimated the percentage of women age 67 and older in Medicare plans who, within six months after suffering a fracture, had either been given a bone mineral density test or a prescription for a drug to treat or prevent osteoporosis. The average for 2004 was only 18 percent. Work is underway toward a new measure that will focus on women age 65 and older reporting whether they have had a bone density test. The source of information for both measures comes from Medicare plans. • NOF is one of three grantees of the U.S. Department of Health and Human Services, Administration on Aging, responsible for developing a strategy to raise awareness about osteoporosis in post-menopausal women.

2004

• Vice Admiral Richard H. Carmona, M.D., M.P.H., F.A.C.S., U.S. Surgeon General, releases a landmark report on “Bone Health and Osteoporosis”, calling the nation to recognize that the growing scope and prevalence of osteoporosis warrants all Americans follow his recommendations that will decrease the likelihood of developing the disease. • One week following the release of the report, NOF co-sponsored with U.S. News & World Report a National Issues Briefing. U.S. Surgeon General Richard H. Carmona welcomed attendees and noted the importance of NOF and similar organizations in disseminating the report’s findings. • NOF successfully advocated for federal funding for osteoporosis research as part of the National Coalition for Osteoporosis and Related Bone Diseases. At NIH, osteoporosis research funding increased to $192 million and at the U.S. Department of Defense, osteoporosis research is funded through two programs, a $50 million Peer Reviewed Medical Research Program, and a $1 million Bone Health and Military Medical Readiness Research Program.

2005

• NOF held the 6th International Symposium on Osteoporosis (ISO), “Current Status & Future Directions,” bringing together a faculty of internationally-renowned experts to share state-of-the-art information and research on bone health and osteoporosis prevention, diagnosis and treatment with hundreds of physicians and other healthcare professionals in Washington, D.C. The ISO is the only biennial scientific meeting in the United States to focus on osteoporosis and bone health across the lifespan. During the meeting, NOF gathered members of its IMC to speak with the Surgeon General on how his report can shape and impact osteoporosis awareness and practice. • NOF efforts were significant in helping to increase federal funding for osteoporosis research from $5 million in 1986 to more than $191 million in 2005.

2006

• NOF successfully launched Strong Women Stand TallTM (SWST), a national program to inspire women to come together, celebrate their strength and build strong bodies and futures. SWST ended the year with nearly 6,000 new members, a new website ([www.strongwomenstandtall.org]), and three educational brochures that teach women how to take action to protect their bone health. • NOF hosted its Eleventh Annual Silhouette Ball bringing together distinguished advocates for bone health. Honorees for the evening included, Senator Olympia J. Snowe (R-ME) for her efforts in advancing osteoporosis research and legislation, Ms. Paula Zahn, for her personal and professional commitment to women’s health issues, and Buzz Aldrin, Ph. D, for his many accomplishments and for fostering public appreciation of space research, including the important knowledge gained about osteoporosis and bone health.


Below is a listing of NOF’s Presidents and Chairs since its founding (as of January 2007):

NOF’s Presidents

William A. Peck, M.D.

B. Lawrence Riggs, M.D.

Robert Lindsay, M.D., Ph. D.

C. Conrad Johnston, Jr., M.D.

Bess Dawson-Hughes, M.D.

Ethel S. Siris, M.D.


NOF’s Chairs

Hon. Paul G. Rogers

Hon. Daniel A. Mica

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