TMA does not benefit financially from recommending these resources. TMA does not certify these organizations and cannot vouch for the quality of their services.

Health and Advocacy Organizations

Accessia Health is a nonprofit organization with a mission to help create a world where medical expenses don’t break the same people who are trying to heal. They offer financial assistance, educational resources, and free legal assistance to help with disability claims,

The American Association of People with Disabilities is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.

The Autoimmune Association is the world’s leading nonprofit organization dedicated to autoimmune disease advocacy, awareness, education, and research.

The Americans with Disabilities Act prohibits discrimination on the basis of disability in employment, programs, and services provided by state and local governments, goods and services provided by private companies, and in commercial facilities.

The Arthritis Foundation site includes health information about types of arthritis and arthritis-related diseases, news, and research updates, along with practical tips for managing arthritis symptoms.

Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the tens of millions of family caregivers who work to meet the living needs of older adults and loved ones by providing education, peer support, and resources to family caregivers across the country.

Cochrane is a global independent network of researchers, professionals, patients, care partners, and people interested in health. They gather and summarize the best evidence from research to help you make informed choices about treatment.

Cure JM Foundation is a rare disease research organization founded and managed by families of children living with juvenile myositis. Cure JM assists volunteers in raising awareness and funds for research, as well as providing a Family Support Network.

The Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA’s mission is to empower the people they serve to live longer, more independent lives.

Myositis Support and Understanding is a patient-run organization, offering a financial assistance program, Facebook support groups, live online video support sessions, and other virtual resources for myositis patients, caregivers, and family members.

Government Agencies and Resources

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. You can find details for any clinical trial and see if you qualify.

Fiscal Note offers a tool where you look up your federal lawmakers and track their votes.

Medicare.gov is the official website for the US government’s medical insurance program for older Americans. Through this website, you can apply for benefits, learn about Medicare costs, compare plans, apply for financial help for healthcare benefits, and more.

Social Security Administration is the main official website for the US government’s federal program providing financial support through retirement, disability, and survivor benefits. If you’ve worked and paid into Social Security, you can access your account, get services, and manage your benefits here.

Social Security Disability is the official website that explains eligibility, benefits, and application for Social Security Disability Insurance, offering guidance on payments, Medicare, reporting changes, and returning to work.

The National Institutes of Health (NIH) is one of the world’s foremost medical research centers, and the Federal focal point for medical research in the US.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is part of the NIH. It supports research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. TMA works closely with physicians and scientists in the Muscle Disease Section of NIAMS.

The National Institute of Environmental Health Sciences (NIEHS) is part of the NIH. It researches how the environment affects biological systems across the lifespan and translates this knowledge to reduce disease and promote human health. TMA works closely with physicians and scientists in the Environmental Autoimmunity Group at NIEHS.

MedlinePlus is a service of the National Library of Medicine (NLM), the world’s largest medical library, which is part of the NIH. Their mission is to present high-quality, relevant health and wellness information that is trusted, easy to understand, and free of advertising, in both English and Spanish.

PubMed is a free resource supporting the search and retrieval of biomedical and life sciences literature with the aim of improving health–both globally and personally. It is part of the NIH and a service of the National Library of Medicine.

NIH Office of Dietary Supplements provides evidence-based information about dietary supplements.

Office of Autoimmune Disease Research (OADR) is part of the NIH. It was established in 2022 to accelerate progress in this area. TMA works closely with physicians and scientists at OADR.

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. TMA is a member organization of NORD.

Living with Disability and Chronic Disease

Adaptive clothing Wardrobe Wagon designs manufactures, and sells apparel for individuals with limited mobility. Their online catalog contains men’s and women’s clothing, underwear, hosiery and footwear.

Minnesota Guide to Assistive Technology is designed to increase awareness of assistive technology and provide information to help with the consideration, selection, acquisitions, and use of assistive technology, whenever and wherever it will be used. It is a Minnesota state government website, but the information applies to anyone regardless of location.

Job assistance guide for people with disabilities is a compilation of resources where you can find organizations that offer job help for people with disabilities and locate training programs and related support services. This resource of offered by Thunderbird School of Global Management at Arizona State University, but the information and resources on this page apply to anyone.

Mobility Access Unlimited is a company that manufactures and distributes adaptive transportation and mobility equipment for people with disabilities. Their products allow easy access to any vehicle, from cars and vans to trucks and SUVs.

Safety products

SOS Group is a family owned contracting business in southern New Jersey, offering home safety assessments and accessibility solutions to allow individuals to remain in their own homes despite disability. The company’s president has dermatomyositis, so she can relate directly to the challenges customers face every day.

Senior Transportation Services An AARP guide to several transportation alternatives and how to find them where you live.

Transportation Resource Guide for Seniors & Individuals with Disabilities This website provides an overview of transportation alternatives to your personal vehicle with links to national and some local programs and services to help older and disabled individuals maintain their independence and social connections.

Senior Living Options

Assisted Living Facilities A nationwide directory that lists each state’s licensed assisted living residences, as well as resources that answer assisted living questions, rate licensed assisted living facilities, and educate consumers on the assisted living industry. This resource is provided by a company called SeniorCare.com which earns money by selling leads and advertising space to senior care providers. This is a starting point for research, but families should always visit facilities and verify licensing before making decisions.

Home Health Care Agencies A nationwide directory of home health care agencies and resources for researching Medicare-certified home care agencies, private duty home care companies, and hospice care services in your area, as well state regulations and other home health care information. This resource is provided by a company called SeniorCare.com which earns money by selling leads and advertising space to senior care providers. This is a starting point for research, but families should always visit facilities and verify licensing before making decisions.

Skilled Nursing Facilities A nationwide directory of nursing homes in the United States as well as resources that discuss various skilled nursing topics. This resource is provided by a company called SeniorCare.com which earns money by selling leads and advertising space to senior care providers. This is a starting point for research, but families should always visit facilities and verify licensing before making decisions.

Senior Housing An online directory and resource platform that helps older adults, caregivers, and families find senior living options across the United States. It provides listings for assisted living, independent living, memory care, nursing homes, and other housing types for seniors. The company makes money by charging senior living communities and care providers for listings, advertising, and lead generation. This is a starting point for research, but families should always visit facilities and verify licensing before making decisions.

The National Aging in Place Council (NAIPC) A network that connects older adults, their loved ones, and caregivers with local professionals who provide the services and support needed to thrive at home. Members can access their director of service providers. A blog offers informative articles on relevant topics.

Resources from TMA’s Industry Partners

Dermatomyositis.com is a trusted resource hub for those who live with dermatomyositis offering expert medical insights, patient and care partner stories, and research updates. This website is sponsored by Priovant Therapeutics, a company that is developing a medication to treat DM.

Lungs&You provides education, resources, and patient stories about interstitial lung disease (ILD) and pulmonary fibrosis to help patients and care partners understand symptoms, diagnosis, and management of these conditions. This website is sponsored by Boehringer Ingelheim, a company that is developing a medication to treat ILD and pulmonary fibrosis.