Myositis-Related Conditions are: Rare Diseases, Challenging for Living, Challenging For Research
MIHRA community works to represent the wide spectrum of myositis diseases in research & care
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MIHRA Seminars in Myositis Diseases
Quarterly online scientific seminars on state of the art developments on pivotal topics in myositis related diseases. MIHRA Scientific Seminars are tailored for those with a dedicated interest in the care and research of myositis diseases. Seminars are open to the public and welcome patients and their loved ones in attendance. Panel discussions are geared…
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MIHRA Global Case Conference
MIHRA Global Case Conference is a quarterly community event open to MIHRA community members. MIHRA Global Case Conference occurs: MIHRA Global Case Conference is an opportunity for the community to examine, discuss and deepen knowledge of disease natural history, clinical practice patterns, diagnosis, recognition of complications and improved clinical care. Global Case Conference events are…
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MIHRA Journal Club
MIHRA Journal Club is a quarterly community event open to all MIHRA community members. Journal club is an opportunity for the community to examine, discuss and deepen knowledge of disease natural history, clinical trial design, pathogenesis, targeted therapeutic pathways and clinical care. Journal clubs are recorded & scheduling is variable to encourage inclusion across time…
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MIHRA Patient Contact Registry
What is the MIHRA Patient Contact Registry (PCR)? A contact registry is a list or directory of people who can be contacted in the event something that might be of interest to them arises. A patient contact registry allows patients or their support partners (very close family or friends) to know when an opportunity to…
Community
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News
MIHRA Community Stories … 🌸The Heavy Lifters🌸
Time loss may = muscle loss in active myositis diseases… A critical conversation emerged among MIHRA patient partners across myositis diseases regarding a patient-voiced barrier to early detection, diagnosis and treatment that may be common for people living with myositis diseases. Being hard-core athletes progressively losing muscle strength, they struggled to be heard – despite…
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Events
MIHRA CTSN CAR-T Trials Community Forum
Within one year of MIHRA’s incorporation as a 501c3 non-profit charitable research organization, the MIHRA Clinical Trial Sites Network (CTSN) Advisory Team announced the 1st CTSN Community Forum to occur on 14 December 2024. This was in response to pressing communications from predominantly earlier investigators regarding differentiating benefits between CAR-T / CAR-NK trial selection, logistics…
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Stories
MIHRA Community Stories … 🌸The Heavy Lifters🌸
Time loss may = muscle loss in active myositis diseases… A critical conversation emerged among MIHRA patient partners across myositis diseases regarding a patient-voiced barrier to early detection, diagnosis and treatment that may be common for people living with myositis diseases. Being hard-core athletes progressively losing muscle strength, they struggled to be heard – despite…