This Directory is under Construction…
Identification – Standardized Quality Care – Community
Idiopathic Inflammatory Myopathies (IIMs) are a collection of several rare diseases that often involves muscle injury and frequently involves other organ systems and parts of the body such as lungs, skin, joints, blood vessels and heart. There are often subtle findings in diagnosis, recognizing and preventing complications as well as disease management.
MIHRA leaders are heavily involved in supporting education and discussion with the global IIM patient community. MIHRA has heard the patient community loud and clear: a directory of IIM specialists is a major patient community priority.
In response to patient community priorities, MIHRA has established MIHRA IIM Specialty Clinics (ISC) is a directory and an engine for global quality of clinical care in myositis-related disorders. This is a project coordinated between MIHRA’s Career Enhancement Core & MIHRA’s Excellence in Clinical Care Core. MIHRA ISC establishes an holistic approach to improving access to excellent clinical care in myositis-related disorders.
Many thanks to Drs. Jessica Day, Myma Albayda and Pari Basharat for coordinating this effort.
Identification
People living with myositis-related disorders and their loved ones will now be able to identify IIM dedicated clinicians and clinics. The MIHRA ISC directory facilitates location of myositis specialty clinics and centers that are convenient for patients or in a city they might easily get to.
IIM Specialty Centers commonly share care with local clinicians (general dermatologists, rheumatologists, neurologists, occupational therapists, physical therapists, pulmonologists, etc.). Through this model of ‘shared care’, IIM specialists and local specialists work together as a team to provide clinical excellence.
Standardized Quality Care
MIHRA IIM Specialty Clinics and Centers are each dedicated to deepening knowledge and improving care for people living with IIM diseases. MIHRA ISC coordinates education with excellence in practice by assuring ISCs are up to date on new developments in assessment and management of IIMs. ISC members participate in case conferences and journal clubs to improve IIM knowledge and care. ISC members develop connections with other IIM-dedicated clinicians as true experts in rare diseases often rely talking through complicated cases with trusted colleagues.
Community
Beyond serving to identify an IIM specialist and being a platform for quality IIM care, MIHRA ISC establishes a community of IIM-dedication clinicians. Community creates deeper, broader and more numerous opportunities to acquire and deepen knowledge and skills through the fellowship of shared experience and formal clinical programming such as Journal Club and Case Conference.
MIHRA ISC members participate in developing updated standards of IIM diagnosis and care.
If you are an IIM dedicated clinician, please: (1) Become a MIRHA member and (2) complete the below clinician contact form to request a MIHRA ISC application for your clinic.
In February 2025, visitors to the MIHRA Foundation web-site will be able to search by selecting one of the continents below, then country and city to find a myositis specialty clinic convenient to them.
Africa
Asia and Pacific Islands
Central & South America
Europe
Middle East
North America
Oceana
For IIM-Dedicated Clinicians who would like to join MIHRA ISC:
MIHRA IIM Specialty Clinic Directory – Request for Registration Form
Thank You for Your Request! Please follow this link to complete a 2 minute registration request form asking for the clinic’s contact/lead clinician and also a back up contact : https://forms.gle/Sonu7GxZ53etuM6h7 You should shortly receive an automatic email with a link for your team’s UNIQUE registration request for MIHRA’s ISC Directory. Best wishes, T