* 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
Advocating for Chronic Conditions, Entitlements, and Social Services (ACCESS) is dedicated to helping find solutions to many of the social and economic problems that confront families facing chronic conditions.
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 American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, research, and patient services in an effective, ethical, and efficient manner.
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 a nonprofit organization providing education, peer support, and resources to family caregivers across the country.
Cure JM Foundation is a volunteer organization founded and managed by families of children dealing with juvenile myositis. Cure JM assists volunteers in raising awareness and funds for research, as well as providing a Family Support Network.
Congress.org lets you look up your federal lawmakers and track their votes.
The Muscular Dystrophy Association (MDA) is a voluntary health agency, a dedicated partnership between scientists and concerned citizens aimed at conquering 40 neuromuscular diseases that affect more than one million Americans.
Myositis Support and Understanding is a patient-run organization, offering Facebook support groups, live online video support sessions, and other virtual resources for myositis patients, caregivers, and family members.
Skin Cancer Awareness Preventing skin cancer is possible, but it means being careful about exposure to ultraviolet rays. Staying out of the midday sun when the sun is the strongest is important. When going out in the sun is unavoidable, people should wear a broad-spectrum sunscreen that has an SPF of at least 30.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) 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.
Human health and human disease result from three interactive elements: environmental factors, individual susceptibility and age. The mission of the National Institute of Environmental Health Sciences (NIEHS) is to reduce the burden of human illness and dysfunction from environmental causes by understanding each of these elements and how they interrelate.
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 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.
NIH Office of Dietary Supplements provides evidence-based information about dietary supplements.
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.
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.
DM/PM and You is a helpful collection of resources for patients and their care partners dealing with the challenges of polymyositis and dermatomyositis.
Disability-Benefits-Help.org provides helpful information about applying for Social Security Disability benefits. This is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests. It is not an attorney referral service or an official US government service.
Medicare.gov is the official website for the US government’s medical insurance program for older Americans.
MedlinePlus is the National Institutes of Health’s website for patients, their families, and friends. It offers reliable, up-to-date health information about diseases, conditions, and wellness issues in language you can understand.
PubMed is a service of the National Library of Medicine. This service allows a keyword search of the 9 million citations in MEDLINE and Pre-MEDLINE (with links to participating online journals), and other related databases.
Living with disability and chronic disease
Assisted Living Directory gives a personal, first-hand family account of the difficult task of placing a senior loved one who is suffering from dermatomyositis into assisted living or another care environment.
The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace.
Find business resources available to people with disabilities, including business plans, funding, specialists and regional grants in the U.S. and the international community: https://www.aabrs.com/business-resources-for-people-with-disabilities/
- Standing frames and medical equipment
- Toilet transfer solutions
- Barrier free lifts
- Portable stair-climbing aide
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.
Options for aging and disability care
AdultDaycare.org offers a nationwide directory of adult day care centers, as well as information about the senior care and adult day care industries.
AssistedLivingFacilities.org offer 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.
HomeHealthCareAgencies.com provides a 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.
The National Aging in Place Council (NAIPC) is a senior support network founded on the belief that an overwhelming majority of older Americans want to remain in their homes for as long as possible, but lack awareness of home and community-based services that make independent living possible, with experts in healthcare, financial services, elder law, design, and home remodeling.
SkilledNursingFacilities.org is a senior healthcare resource that offers a nationwide directory of nursing homes in the United States as well as resources that discuss various skilled nursing topics.