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 Public Liaison Officer Colleen Dundas.
Academy for Radiology & Biomedical Imaging Research
The Academy for Radiology & Biomedical Imaging Research and its Coalition for Imaging and Bioengineering Research (CIBR) advocates for imaging research at NIH and across the federal agencies and seeks to foster conversation, collaboration, and advocacy opportunities among important stakeholders in the imaging research community: imaging manufacturers, patient advocacy groups, academic departments and imaging societies.
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 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 ethically-driven, professional membership organization committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty. Founded in 1934, it is a not-for-profit, global medical society that serves over 9,600 physicians, health professionals, and scientists worldwide.
American Federation for Medical Research
Founded in 1940, the AFMR’s mission is to develop and mentor tomorrow’s leaders in medical research. With four regional meetings and participation in two national meetings, this society provides a forum for young clinical scientists to showcase their work and network with more experienced professionals. It offers unique multi-disciplinary interactions and opportunities for leadership.
American Orthopaedic Society for Sports Medicine
The American Orthopaedic Society for Sports Medicine (AOSSM) is the world’s leading advocate for orthopaedic surgeons and health professionals who work to prevent and treat sports injuries among all levels of athletes and active people everywhere. We cultivate evidence-based knowledge, provide extensive educational programming, promote emerging research and engage a community of sports medicine specialists to advance the science and practice of 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.
The ASBMR membership comprises basic research scientists, and clinical investigators in bone and mineral metabolism and related fields along with physicians and other healthcare practitioners. Current worldwide membership numbers approximately 4,000 with interests in biomechanics, cell biology, molecular biology, dentistry, developmental biology, endocrinology, epidemiology, internal medicine, metabolism, molecular genetics, nephrology, obstetrics-gynecology, orthopaedics, pathology, pharmacology, physiology, rheumatology and other research/clinical areas.
ASBMR encourages and promotes the study of this expanding field through annual scientific meetings; the Journal of Bone and Mineral Research and JBMR Plus; and advocacy and interaction with Government agencies and related societies.
American Society of Gene and Cell Therapy
The American Society of Gene & Cell Therapy (ASGCT) is the primary membership organization for scientists, physicians, professionals, and patient advocates involved in gene and cell therapy. Our mission is to advance knowledge, awareness, and education leading to discovery and clinical application of gene and cell therapies to alleviate disease—we do that by serving as a catalyst to transform medicine by advancing gene and cell therapies to benefit patients and society.
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 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
The Dermatology Nurses’ Association is a professional nursing organization comprised of a diverse group of individuals committed to quality care through sharing knowledge and expertise. 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 Research
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
The Orthopaedic Research and Education Foundation (OREF) is a charitable 501(c)(3) organization committed to improving lives by supporting excellence in orthopaedic research. OREF is dedicated to being the leader in supporting research that improves function, eliminates pain and restores mobility, and is the premiere orthopaedic organization funding research across all specialties.
Orthopaedic Research Society
As a society, the ORS supports engineers, orthopaedic surgeons, veterinarians, biologists, clinicians and the broader community of those in the field of musculoskeletal science and orthopaedic care.
The goal of the ORS is to accelerate musculoskeletal discovery to improve health.
Rheumatology Research Foundation
The Rheumatology Research Foundation provides funding to recruit the best and brightest into the field, train rheumatology professionals in all career stages and support investigators conducting research that will lead us to more options for people with rheumatic disease. Foundation awards offer support for the rheumatology community in all areas of focus, leading to breakthrough discoveries and cures.
Society for Investigative Dermatology
Society for Pediatric Dermatology
The mission of the Society for Pediatric Dermatology is to advance the specialty through education and research, to develop new means of treatment, and to provide advocacy in support of pediatric patients with skin, hair and nail disorders.
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 Bone Health
American Bone Health teaches people how to build and keep strong and healthy bones for life with practical and up-to-date information and resources to inspire them to prevent bone loss, osteoporosis and fractures.
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.
4915 St. Elmo Avenue, Suite 105
Bethesda, MD 20814
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
The American Society of Nephrology leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.
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.
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.
Basal Cell Carcinoma Nevus Syndrome (BCCNS) Alliance
Churg Strauss Syndrome Association
35 New South St. #211
Northampton, MA 01060
Cicatricial Alopecia Research Foundation
Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. We will improve the lives of those living with CMD through engagement and support of our community.
3217 East Carson Street #1014
Lakewood, CA 90712
Website: https://www.curecmd.org/ (con información en español)
Cutaneous Lymphoma Foundation
Providing education, support and services to cutaneous lymphoma patients and families worldwide.
P.O. Box 374
Birmingham, MI 48012-0374
Website: https://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.
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
2885 Sanford Ave. SW #40754
Grandville, MI 49418
Foundation for Ichthyosis & Related Skin Types, Inc.
Members of the foundation include those affected with ichthyosis and related disorders, dermatologists 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.
Global Parents for Eczema Research
Global Parents for Eczema Research is an international coalition of parents of children with moderate to severe atopic dermatitis. We engage with researchers and innovators throughout the research process and foster open partnerships between these stakeholders and families. We do this through four key strategies: influencing research, developing research, engaging in public policy, and sharing research.
Gluten Intolerance Group of North America
Non-profit organization which empowers the gluten-free community through consumer support, advocacy, and education. Initiatives include provision of community support through local Branches, provision of extensive educational materials and programs, and certification of gluten-free food products.
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
Founded in 1990, the International Myeloma Foundation (IMF) is the first and largest organization focusing specifically on multiple myeloma. The IMF’s reach extends to more than 525,000 members in 140 countries worldwide. The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure through their four founding principles: Research, Education, Support, and Advocacy.
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 Research Alliance
The Lupus Research Alliance aims to transform treatment while advancing toward a cure by funding the most innovative lupus research in the world. The organization’s stringent peer review grant process fosters diverse scientific talent who are driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus. Because the Lupus Research Alliance’s Board of Directors fund all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.
Lymphatic Education & Research Network
The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded in 1998 to fight lymphatic diseases and lymphedema through education, research and advocacy. With chapters throughout the world, LE&RN seeks to accelerate the prevention, treatment and cure of these diseases while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic diseases, which include lymphedema and lipedema.
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 Eczema Association
The National Eczema Association improves the health and quality of life for individuals with eczema/atopic dermatitis through research, support, and education.
National Eosinophilia-Myalgia Syndrome Network
We are a non-profit organization dedicated to helping EMS survivors and their families by offering educational information and peer support. Our services are available to those sickened by L-tryptophan supplements in the 1989 EMS epidemic and also to those newly sick after taking current L-tryptophan or 5-HTP supplements. We are committed to encouraging research of this little-understood disease with, as of yet, no cure or peer-reviewed medical treatments.
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 Organization for Rare Disorders
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
This organization serves as a clearinghouse for information about rare disorders. It monitors the Orphan Drug Act and other policies that impact rare disease patients, connects individuals for mutual support, funds research and hosts a natural history study platform, provides programmatic services and support to rare disease organizations, health-related agencies, and government. It also runs educational programs for individuals, families, students, health professionals, and organizations.
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 organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected.
National Scoliosis Foundation
National Spine Health Foundation
The National Spine Health Foundation is a nonprofit organization dedicated to improving spine and neck health care through education, research, and patient advocacy. We are committed to improving patients’ lives through knowledge and hope. Our Foundation educates Americans about the treatment and prevention of neck and back disorders. We prove what works, drive innovation, and support patients on their journey to spine health. We also support policies and initiatives that focus on helping patients.
National Vitiligo Bond Inc. Foundation
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.
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
PC Project is fighting for a cure for those suffering with the extremely painful skin disorder, Pachyonychia Congenita. This is accomplished by empowering research and collaboration in the medical and scientific community through its International PC Consortium (IPCC). But most importantly is connecting and helping patients through the IRB-approved International PC Research Registry (IPCRR). The IPCRR is key in understanding PC and advancing research.
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.
This patient advocacy organization provides a wide range of services for patients and caregivers 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 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.
The foundation works to educate, raise awareness and encourage research on Sjögren's. It publishes comprehensive patient and professional newsletters, among many other resources, and awards a series of grants for novel and promising research related to the disease.
Society for Women's Health Research
The society is dedicated to promoting sex differences research and improving women’s health through science, policy, and education. SWHR is involved in a wide range of policy issues that affect women's health and serves as a resource for policymakers on women’s health.
Soft Bones, Inc.
Soft Bones is a community of healthcare professionals (clinicians and researchers) and people and families living with hypophosphatasia (HPP). Through education, awareness and advocacy, we are working to connect, empower and educate the HPP community to provide support and further research and treatment of the disease.
Spondylitis Association of America
Spondylitis Association of America (SAA) is the only nonprofit organization in the US dedicating 100% of its resources to improving the lives of the spondylitis community. SAA focuses on funding and promoting medical research, advancing education, providing extensive supportive programs and aggressively advocating on behalf of all those affected by spondylitis.
This organization is for people with Sturge-Weber syndrome and/or a Port Wine Birthmark as well as their families, concerned professionals and supporters. It provides information and support and facilitates and funds vital research.
12345 Jones Road, Suite 125
Houston, TX 77070
Website: http://www.sturge-weber.org/ (con información en español)
The Marfan Foundation
This organization provides education, patient programs and support services, and a comprehensive research program on Marfan syndrome and related connective tissue conditions.
The Myositis Association
The Myositis Association’s mission is to increase support, awareness and funding for the myositis patient, caregiver and research community.
1940 Duke Street, Suite 200
Alexandria, VA 22314
Website: http://www.myositis.org (con información en español)
Tuberous Sclerosis Alliance
US Pain Foundation, Inc.
U.S. Pain Foundation is a 501(c)(3) dedicated to serving those who live with pain conditions and their care providers. The mission of the organization is to empower, educate, connect, and advocate for people living with chronic conditions that cause pain.
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.
VITFriends is dedicated to promoting awareness and educating the masses, as we provide information and support to people living with the autoimmune disease known as Vitiligo for which there is still NO known cure.
We support medical research, as we seek to work collaboratively with Dermatologists throughout the USA. Key is our advocacy efforts with our first lobby day on October 4, 2017 and our first Congressional Black Caucus visit on September 12, 2018.
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.
National Bone Health Alliance
Osteoarthritis Action Alliance
The Osteoarthritis Action Alliance (OAAA) is a coalition of member organizations committed to elevating osteoarthritis (OA) as a national health priority and promoting effective policy solutions that address the individual and national toll of OA. As a leader in this public health effort, the OAAA promotes evidence-based interventions and the establishment of supportive policies, communication initiatives, and strategic alliances for OA prevention and management. The OA Action Alliance also works to ensure people with OA have the access, skills, and capacity to benefit from effective and proven interventions.