Mission: Our mission is to improve the lives and empower those fighting Myositis through education, support, awareness, advocacy, and access to research. We are a patient-centered organization that provides: Independent, interactive online platforms that educate and connect patients, caregivers and family members with each other and with healthcare professionals. Educational resources for patients, families and the healthcare community. Need-based financial support for medical-related expenses. Information-based advocacy with all levels of policy-makers, insurance companies and other medical services and their decision-makers. Innovations in research and treatments through clinical trial matching and by contributing a portion of our donations when possible.
Results: We have continued to build a strong network of myositis patients and caregivers, providing them the educational support they deserve in dealing with a rare group of autoimmune diseases, the Idiopathic Inflammatory Myopathies. Rare and chronic illness causes financial hardships for many patients and why our financial assistance program is so important. Since the launch of the program in 2016, we have awarded over $40,000 for medical bills, household expenses, and medical travel. We have and are continuing to partner with organizations, researchers, and pharmaceuticals companies to provide access to research for myositis patients. In addition, we have partnered with a tech company, Antidote, to offer a clinical trial matching program. Education is a large part of helping any rare disease community. We host a comprehensive myositis website, provide print materials, and take phone calls to help patients and caregivers better understand their disease.
Target demographics: the Myositis Community
Direct beneficiaries per year: over 8,000 myositis patients and caregivers with support, awarded over $35,000 in financial assistance
Geographic areas served: the United States
Programs: myositis education, rare disease advocacy, myositis patient and caregiver support, myositis patient financial assistance, providing access to research,