Welcome to MIHRA’s Single-Page Seedling 🌱 Web-site!
Functional for Now with a ✨ Wildly Web Bright Future ✨to Come in a Few Weeks!
Myositis-Related Conditions are:
Rare Diseases
Challenging for Living
Challenging For Research
MIHRA is a non-profit science, education & advocacy organization of international multi-disciplinary, multi-specialty experts (including patients) focused on better living & research across myositis-related disorders.
MIHRA recognizes myositis takes on many forms beyond muscle.
The MIHRA research community is working to represent the wide spectrum of the myositis disease experience within research and in care.
MIHRA VISION
To Create a World Where We Can Cure Myositis Together
MIHRA 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 CORES
- Clinical Trial Readiness
- Database Harmonization
- Education, Mentorship & Career Advancement
- Excellence in Clinical Care
- Global Engagement & Equity
Making clinical trial more accurate and available to patients.
Learning about myositis from sharing worldwide anonymous disease information.
Ensuring the future of myositis research through proactive mentorship of careers in myositis.
Expanding and fortifying worldwide clinical confidence in diagnosing and caring for people living with myositis.
Inclusion of myositis expertise and care across disciplines, specialties, geography and socioeconomic strata.
MIHRA Myositis University
In collaboration with our partners at The Myositis Association (TMA) and Post-Graduate Institute of Medicine (PIM). Cost-free professional accredited education to enhance worldwide knowledge in diagnosis and care of people living with myositis. Up to 30 CME/MOC/CE/CEUs to be launched April 2024 – to include accreditation for all specialties and disciplines. This is also a learning and advocacy resource for people living with myositis related conditions.
Many thanks to Ms. Ingrid deGroot, Drs, Floranne Ernste, Helene Alexanderson, Julie Paik, Lesley Ann Saketkoo, Lisa Christopher-Stine, and Malin Regardt for coordinating this effort.
MIHRA Myositis Specialty Clinics
Coming soon to this web-site! A worldwide listing of clinics specializing in adult and pediatric myositis related disorders.
People living with myositis-related disorders and their loved ones will be able to locate myositis specialty clinics and centers that is convenient for them or in a city they can easily get to. Myositis Specialty Centers commonly share care with local clinicians (general dermatologists, rheumatologists, neurologists, pulmonologists, etc.) – and together work as a team to provide clinical excellence.
Please contact a MIHRA representative to request Specialty Center applications for your clinic
Many thanks to Drs. Jessica Day, Myma Albayda and Pari Basharat for coordinating this effort.
MIHRA Current Clinical Studies Listings
Coming soon to this web-site! Worldwide listing of ongoing clinical trials and studies in pediatric and adult myositis-related disorders.
Visitors (clinicians and patients) will be able to peruse the listings according to disease sub-type. The listing provides easy to find information about existing studies in Myositis disorders and how to contact study investigators.
The listing also serves as a snapshot of the current clinical research landscape for myositis researchers. We hope this effort leads to strong multi-center collaborations.
Many thanks to Drs. Jessica Day, Myma Albayda and Pari Basharat for coordinating this effort. Special thanks to Dr. Karen Cheng and iMyoS.
MIHRA Clinical Trials Site Network
The MIHRA CTSN is a community of newly emerging and long-established research sites in Myositis-related disorders.
The MIHRA CTSN enables mapping of global site resources to inform feasible and efficient clinical trials design and development.
The MIHRA CTSN serves as a community-based platform for trial sites to learn from each other and to support global growth of resources for optimal clinical trial implementation.
Please contact a MIHRA representative to register your research site.
Many thanks to Drs. Antonia Valenzuela and Lesley Ann Saketkoo for coordinating this effort.
