Vision

Our vision is to create a world where patients, care partners, and providers have better knowledge, support, and understanding of Myositis.

Goals

1. 1.Through patient surveys and listening sessions, we identified growing unmet needs related to pain management, quality of life, and gaps in provider understanding of myositis variability. In response, we developed new patient-centered programs including virtual support groups, educational video sessions, and expanded provider education to address real-world symptoms and improve daily functioning.
2. 2.As an all-virtual, patient-led organization, we expand access to existing programs by keeping overhead low and scaling virtual delivery. We grow our Patient Financial Assistance program, peer support groups, and online communities while recruiting and training volunteer leaders to broaden outreach, strengthen education, and increase support for patients and caregivers worldwide.
3. 3.We are strengthening our advocacy efforts to elevate the voices of people living with myositis in research, regulatory, and policy discussions. Through patient-centered research, FDA engagement, education, and collaboration with partner organizations, we advocate for improved treatments, inclusive clinical trials, and greater recognition of patient needs across the healthcare system.