The Coalition is led by two volunteer co-chairs and governed by a steering committee, which is composed of 12 Coalition members. The co-chairs and steering committee determine Coalition membership eligibility.
For more information on the NIAMS Coalition, contact NIAMS Acting Public Liaison Officer Reaya Reuss.
American Academy of Dermatology
American Academy of Orthopaedic Surgeons
The academy provides education and practice management services for orthopaedic surgeons and allied health professionals, including those who treat children. It also serves as an advocate for improved patient care and informs the public about the science of orthopaedics. The scope of practice includes disorders of the bones, joints, ligaments, muscles, and tendons. For a single copy of an AAOS brochure, send a self-addressed stamped envelope to the address above or visit its Web site.
American Academy of Physical Medicine and Rehabilitation
The academy is the national society of physical medicine and rehabilitation physicians, whose patients include people with physical diseases and chronic, disabling conditions. Its mission is to maximize patients' quality of life.
American Association of Colleges of Osteopathic Medicine
American Association of Neuromuscular & Electrodiagnostic Medicine
The American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) is a nonprofit membership association dedicated to the advancement of neuromuscular, musculoskeletal, and electrodiagnostic (EDX) medicine. Our mission is to improve the quality of care for patients experiencing abnormal movements, muscle cramps, numbness/tingling, pain, and weakness. Our members are dedicated to diagnosing and managing a variety of nerve and muscle diseases, and we are dedicated to serving them.
American College of Rheumatology
The American College of Rheumatology (ACR) is an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles. The Association of Rheumatology Health Professionals, a division of ACR, aims to enhance the knowledge and skills of rheumatology health professionals and to promote their involvement in rheumatology research, education, and quality patient care. The association also works to advance and promote basic and continuing education in rheumatology for health professionals who provide care to people with rheumatic diseases.
American Federation for Medical Research
This organization provides a forum for young clinical scientists. It promotes and encourages original research in clinical and laboratory medicine; offers specialized education programs; and presents annual scientific programs on various aspects of medicine, including immunology and connective tissue, genetics, dermatology, and patient care.
American Nurses Association
This professional organization represents registered nurses. It has 53 constituent state associations and 13 organizational affiliate members.
American Orthopaedic Society for Sports Medicine
American Osteopathic Association
American Physical Therapy Association
The association is a national professional organization representing physical therapists, allied personnel, and students. Its objectives are to improve research, public understanding, and education in the physical therapies.
American Society for Bone and Mineral Research
The American Society for Bone and Mineral Research is a professional scientific and medical society established to bring together clinical and experimental scientists involved in the study of bone and mineral metabolism. ASBMR encourages and promotes the study of this expanding field through annual scientific meetings; an official journal, the Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism; and advocacy and interaction with Government agencies and related societies.
American Society of Gene and Cell Therapy
Association of Rheumatology Health Professionals
This division of the American College of Rheumatology (ACR) is a professional association of nonphysician health care professionals who specialize in rheumatology.
This is a professional organization of biophysicists, biochemists, and other scientists interested in the application of physical laws and techniques to the analysis of living phenomena.
This organization is composed of the members of national and regional dermatological societies and board-certified dermatologists (doctors who specialize in skin diseases). The foundation seeks to control skin diseases through research, education, and better patient care.
Dermatology Nurses Association
This organization addresses professional issues involving dermatology nurses. It develops high standards of dermatologic nursing care, facilitates communication among members, and conducts educational meetings.
Federation of American Societies for Experimental Biology
This federation of scientific societies represents a variety of medical researchers and includes the American Physiological Society, the American Society for Biochemistry and Molecular Biology, the American Society for Pharmacology and Experimental Therapeutics, the American Society for Investigative Pathology, the American Institute of Nutrition, the American Association of Immunologists, the American Society for Cell Biology, the Biophysical Society, and the American Association of Anatomists.
Foundation for Physical Therapy
The mission of the Foundation for Physical Therapy is to fund and publicize physical therapy research that determines the scientific basis and value of services intended to optimize physical functioning by physical therapists, and to develop the next generation of researchers.
Health Partners Institute
National Association of Orthopaedic Nurses
This is an association of nurses involved or knowledgeable in orthopaedic nursing. It enhances the personal and professional growth of orthopaedic nurses through continuing education programs and promotes research development and advances in orthopaedic nursing.
National Athletic Trainers Association
The National Athletic Trainers’ Association is a professional organization composed of certified and licensed athletic trainers. NATA’s mission and that of its research foundation is to enhance the quality of health care provided by certified athletic trainers and to advance the athletic training profession. Athletic trainers are unique health care providers who specialize in injury prevention, assessment, treatment and rehabilitation of injuries and illnesses. They provide physical medicine and rehabilitation services under the direction of physicians.
Orthopaedic Research and Education Foundation
Orthopaedic Research Society
This is a society of orthopaedic surgeons and other investigators who are elected as active members on the basis of their previous scientific activity, their continued participation in the field of research, and their accomplishments in orthopaedic surgery. The society promotes orthopaedic research.
Society for Investigative Dermatology
American Autoimmune-Related Diseases Association, Inc.
The American Autoimmune-Related Diseases Association (AARDA) is a nonprofit voluntary health agency dedicated to bringing a national focus and collaborative effort to the more than 100 known autoimmune diseases through education, awareness, research, and patient services. By collaborating with the National Coalition of Autoimmune Patient Groups (NCAPG), AARDA supports legislative advocacy for autoimmune disease patients. AARDA provides free patient education information, physician and agency referrals, forums and symposia, and a quarterly newsletter.
American Behçet's Disease Association
American Chronic Pain Association
This voluntary organization's mission is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain; to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain; and to offer support and information for people with chronic pain.
PO Box 850
Rocklin, CA 95677
Website: https://www.theacpa.org (con información en español)
American Porphyria Foundation
This is an organization for people interested in advancing awareness and treatment of the many forms of porphyria and people who have porphyria. The foundation provides financial support for researchers. It seeks to improve diagnosis and treatment and to locate people with porphyria.
4900 Woodway Drive, Suite 780
Houston, TX 77056-1837
Toll-free: 866-APF-3635 (273-3635)
Website: http://www.porphyriafoundation.com/ (con información en español)
American Skin Association
The American Skin Association is an organization dedicated to supporting research on skin diseases. It promotes public education on preventative treatments and the cure of skin disorders.
American Society of Nephrology
1510 H Street NW
Washington, DC 20005
Antiphospholipid Antibody Syndrome Foundation of America, Inc.
This foundation is dedicated to fostering and facilitating joint efforts in the areas of education, support, research, patient services and public awareness of Antiphospholipid Antibody Syndrome.
The Arthritis Foundation is devoted to supporting arthritis research and providing educational and other services to individuals with arthritis. The foundation publishes a free pamphlet on rheumatoid arthritis and a magazine for members on all types of arthritis. It also provides up-to-date information on research and treatment, nutrition, alternative therapies, and self-management strategies. Chapters nationwide offer exercise programs, classes, support groups, physician referral services, and free literature. The foundation also has free information about lupus, scleroderma, and other autoimmune and rheumatic conditions on its Web site.
Arthritis Foundation/Metropolitan Washington Chapter
Basal Cell Carcinoma Nevus Syndrome Life Support Network
Churg Strauss Syndrome Association
35 New South St. #211
Northampton, MA 01060
Cicatricial Alopecia Research Foundation
19401 S. Vermont Ave., Suite J100
Torrance, CA 90502
Website: http://www.curecmd.org (con información en español)
Cutaneous Lymphoma Foundation
P.O. Box 374
Birmingham, MI 48012-0374
Website: http://www.clfoundation.org (con información en español)
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
This association is for people with epidermolysis bullosa and their families, as well as other interested individuals. Its goals are to support research and to relieve the physical and emotional distress of people with epidermolysis bullosa by providing advice, guidance, and support. It distributes educational material to the public and to medical professionals and conducts educational programs.
Ehlers-Danlos National Foundation
The foundation serves people with or interested in Ehlers-Danlos syndrome (EDS) and medical professionals who treat EDS. It aids networking among members for communication and support and maintains a library of educational materials.
Epidermolysis Bullosa Action Network
Facioscapulohumeral Society, Inc.
This organization promotes scientific and clinical research on FSH muscular dystrophy (FSHD) through the education of the public, government bodies, and the medical profession. It collects and distributes information on FSHD and its cause and treatment, fosters communication among interested parties worldwide, helps organize support groups for people living with FSHD, and serves as a referral source for health professionals.
Fibrous Dysplasia Foundation
1380 Monroe St., NW #420
Washington, DC 20010
Foundation for Ichthyosis & Related Skin Types, Inc.
Members of the foundation are people with ichthyosis and related diseases, dermatologists (doctors who specialize in skin diseases), and others, including doctors and health professionals who are interested in the disease. The foundation acts as a support group for people with ichthyosis and their families.
4301 Connecticut Avenue, N.W., Suite 404
Washington, DC 20008
Toll-free: 800-336-GENE (4363)
Website: http://www.geneticalliance.org (con información en español)
Global Healthy Living Foundation
The Global Healthy Living Foundation (GHLF) is a 501(c)(3) non-profit organization with the mission to improve the quality of life for people with chronic illness. GHLF advocates for improved access to care at the community level, amplifying education and awareness efforts within its social media framework. Central to this advocacy are GHLF’s successes educating about the importance of diagnosis, early and innovative medical intervention, long-term lifestyle improvement with the goal of improved outcomes.
Gluten Intolerance Group of North America
This organization for people with gluten intolerance (dermatitis herpetiformis) and their family members, physicians, and dieticians works to educate patients, health care personnel, and the public. It offers psychological support to patients and their families and conducts research into the causes of the disorder.
Hidradenitis Suppurativa Foundation, Inc.
Dedicated to improving the quality of life and quality of care for individuals and families affected by Hidradenitis Suppurativa (HS). Founded for the sole purpose of funding efforts to discover the molecular and cellular causes of HS, to aid in the development and delivery of more effective therapy to patients with this common, debilitating, and eminently chronic disease.
1301 20th Street, Suite 570
Santa Monica, CA 90404
International Foundation for Autoimmune Arthritis
International Myeloma Foundation
The foundation sponsors research in multiple myeloma.
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
Website: http://www.myeloma.org (con información en español)
International Pemphigus & Pemphigoid Foundation
The foundation provides information to patients, their families, their friends, and the public. It educates the medical community, provides support and counseling to those in need, and helps patients cope with the side effects of drug therapy. It seeks to inform patients and others about the latest research for finding a cure, and it raises funds to promote and support research into the causes and treatment of pemphigus.
Lupus and Allied Diseases Association, Inc
The Lupus and Allied Diseases Association is a passion-driven, all-volunteer organization dedicated to improving quality of life for those impacted by lupus and allied diseases and conditions of unmet need by fostering collaboration among stakeholders and promoting innovative advocacy, awareness and biomedical research program initiatives.
Lupus Foundation of America
The Lupus Foundation of America is a national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus; and to providing support, services and hope to all people with this condition. The LFA and its network of nearly 300 chapters and support groups conduct programs of research, education, and advocacy.
Lupus Foundation of America, Inc., DC/MD/VA Chapter
This chapter provides current information, educational programs, and outreach services to improve the quality of lives for people with lupus while also supporting research.
Lupus Research Alliance
The Lupus Research Alliance, is a nonprofit organization devoted exclusively to the support of promising research for the prevention, treatment, and cure of lupus. Through accelerated, focused, goal-oriented research programs, the Lupus Research Alliance aims to promote basic and clinical sciences to achieve major advances leading to a better understanding of the causes of lupus.
Muscular Dystrophy Association
222 S. Riverside Plaza
Chicago, IL 60606
Toll-free: 800 572-1717
Website: http://www.mdausa.org (con información en español)
National Alopecia Areata Foundation
Foundation membership includes individuals concerned about or interested in alopecia areata. The foundation seeks to develop public awareness, provide a support network, raise funds for resources, and keep patients informed about the latest treatments.
National Association for Pseudoxanthoma Elasticum
This is an association for people who have pseudoxanthoma elasticum (PXE), as well as others who are interested in the condition. The association provides educational materials.
National Eczema Association
The association works to improve the health and quality of life of people with atopic dermatitis/eczema, and educates patients, their families, and their friends.
National Eosinophilia-Myalgia Syndrome Network
National Fibromyalgia Association
This association is concerned with developing and executing programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, the media, government, and the medical community. It makes the latest research and treatment information available to people with fibromyalgia, and it educates and motivates the medical community to provide faster diagnosis, better treatment, and more extensive research.
National Foundation for Ectodermal Dysplasias
This is an association of people with ectodermal dysplasias and the medical community. It educates health care professionals in patient treatment, locates treatment facilities, and provides referral information.
National Marfan Foundation
National Organization for Rare Disorders
This organization serves as a clearinghouse for information about rare disorders. It monitors the Orphan Drug Act, links individuals for mutual support, encourages research on rare diseases, and encourages faster communication among voluntary organizations, health-related agencies, and government. It also provides information on rare disorders and refers patients to organizations that can assist them.
National Osteoporosis Foundation
The National Osteoporosis Foundation (NOF) is a nonprofit, voluntary health organization dedicated to promoting lifelong bone health in order to reduce the widespread prevalence of osteoporosis and associated fractures, while working to find a cure for the disease through programs of research, education, and advocacy. NOF provides information and resources on osteoporosis for patients and the public. It also provides resources and professional relations and education programs on the disease for health professionals.
National Psoriasis Foundation
The National Psoriasis Foundation (NPF) is a non-profit, voluntary health agency dedicated to finding a cure for psoriasis and psoriatic arthritis and eliminating their devastating effects through research, advocacy and education.
National Scoliosis Foundation
National Vitiligo Foundation, Inc.
The foundation strives to locate, inform, and counsel vitiligo patients and their families; to increase public awareness and concern for the vitiligo patient; to broaden the concern for the patient within the medical community; and to encourage, promote, and fund increased scientific and clinical research on the cause, treatment, and ultimate cure.
National Vulvodynia Association
The association was created to improve the lives of women affected by vulvodynia. It encourages patient self-help, provides a support network, educates the public, encourages research into more effective treatment and eventual cure, and coordinates a central source of information on suspected causes, current treatments, and ongoing research.
Nevus Outreach, Inc.
Osteogenesis Imperfecta Foundation
This is an organization of health professionals, people with osteogenesis imperfecta (OI), and parents of children with OI. It supports and encourages medical research into effective treatment of the disorder and seeks to educate people with OI, their families, and health care professionals.
Pachyonychia Congenita Project
Paget Foundation for Paget’s Disease of Bone and Related Disorders
This is an organization for people with Paget's disease of bone and doctors and other health care professionals who are interested in the disorder and in improving patient care. It conducts educational programs for people with Paget's disease of bone, health care professionals, and the public and refers patients to physicians who specialize in treating the disorder.
Parent Project Muscular Dystrophy
The Parent Project Muscular Dystrophy mobilizes people in the United States and worldwide in a collaborative effort to enable people with Duchenne and Becker Muscular Dystrophy to survive, thrive and fully participate within their families and communities into adulthood and beyond.
This organization for people with pseudoxanthoma elasticum (PXE) fosters support groups, encourages research, provides physician referrals, and publishes a newsletter and educational materials. Its goal is to support patients, provide resources for clinicians, and encourage research.
Reflex Sympathetic Dystrophy Syndrome Association
This is an association for people with reflex sympathetic dystrophy syndrome (RSDS) and health care professionals who treat RSDS patients. It educates the public and the media and provides physician referrals.
SAFE KIDS Worldwide
This voluntary organization publishes information and funds research on scleroderma. It also offers patient education seminars, support groups, doctor referrals, and information hotlines.
300 Rosewood Drive, Suite 105
Danvers, MA 01923
Toll-free: 800-722-HOPE (4673)
Website: http://www.scleroderma.org (con información en español)
Scleroderma Foundation of Greater Washington
The Scleroderma Foundation of Greater Washington is the local Washington, D.C., chapter of the national foundation. It provides educational and emotional support for patients and their families. The foundation seeks to increase awareness of the condition and funds research to determine the cause, enhance treatment, and find a cure.
Scleroderma Research Foundation
The foundation’s goal is to find a cure for scleroderma by funding and facilitating the most promising, highest quality research and by placing the disease and its need for a cure in the public eye. The foundation distributes patient handbooks and a twice-yearly, research-related newsletter.
Sjogren's Syndrome Foundation, Inc.
This organization is devoted to Sjogren's syndrome. It publishes free pamphlets and a newsletter for members that provides up-to-date information. It provides clinic and physician referrals.
Society for Women's Health Research
The society promotes a public policy dialogue and serves as a resource for policy makers on women's health issues. It is involved in a wide range of legislative issues that affect women's health and the field of women's health research.
Soft Bones, Inc.
Spondylitis Association of America
The association is the main voluntary organization devoted to all forms of spondylitis. It publishes materials for patients and for health care professionals.
This organization is for people with Sturge-Weber syndrome and their families, concerned professionals, and supporters. It provides information and support to people with Sturge-Weber syndrome.
P.O. Box 418
Mt. Freedom, NJ 07970-0418
Website: http://www.sturge-weber.org/ (con información en español)
The Myositis Association
The mission of The Myositis Association is to find a cure for inflammatory and other related myopathies, while serving those affected by these diseases.
1737 King Street, Suite 600
Alexandria, VA 22314
Website: http://www.myositis.org (con información en español).
Tuberous Sclerosis Alliance
US Pain Foundation, Inc.
The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis.
VITFriends Vitiligo Support Group, Inc.
Vitiligo Bond, Inc.
Vitiligo Bond Inc. is dedicated to funding research into the causes, prevention, treatments and a cure for vitiligo; increasing awareness of vitiligo spectrum disorders; and advocating for the needs of individuals with vitiligo and their families.
Vitiligo Research Foundation
1, Penn Plaza, 36th floor, office 3606
New York, NY 10119
Website: http://www.VRFoundation.org (con información en español)
Vitiligo Support International, Inc.
This organization, with more than 30,000 active members, promotes awareness and education about vitiligo, provides information and interaction to people living with vitiligo, and works to encourage and support medical research to find better treatments and a cure for vitiligo.