MIHRA is a non-profit 501(c)3 science, education & advocacy organization of international multi-disciplinary, multi-specialty experts (including patients) focused on better living & research across myositis disorders.
MIHRA’s Vision:
To Create a World Where We Cure Myositis Together.
The word MIHRA (pronounced mee-rah) across multiple languages throughout the globe has roots in meanings such as goodness, kindness, community, communal governance & peace. Meanings that perfectly reflect 25 Years of international research community efforts in myositis.
MIHRA recognizes that myositis is several different diseases that takes on many forms beyond muscle. The MIHRA research community works to represent the wide spectrum of the myositis disease experience within research & in care.
MIHRA’s Mission
- To optimize the health & well-being of people living with myositis worldwide.
- To cultivate global expertise and promote synergy across myositis endeavors.
- To secure future research and clinical care through mentorship programs and education.
- To drive international collaborative research and clinical trial readiness in myositis.
Five MIHRA Core Commitments
- Clinical Trial Readiness (CTR): The heart of CTR is ensuring that clinical trials are designed and implemented with the highest rigor in myositis diseases. Trial designs must support patient enrollment and post-trial access novel treatments for all patients who might benefit from treatment. Trial designs also must ensure the highest performing outcome measures to accurately detect and measure changes in disease activity – thus, ensuring that trial results closely reflect the patient experience of both disease and treatment.
- Bio-Data Harmonization: Learning about myositis from worldwide sharing of anonymized disease information through defining common data elements (CDEs) that reflects feasible real-world use & standardization of feasible, quality bio-specimens collection.
- Education, Mentorship & Career Advancement: Nurturing the future of myositis research and care through proactive career growth.
- Excellence in Clinical Care: Fortifying worldwide clinical confidence in the diagnosis & care of people living with myositis diseases.
- Global Engagement & Equity: Engaging equal voice and participation of expertise across disciplines, specialties, genders, ethnicities, career stages, geography & socioeconomic strata.