Nori's Fight Strategy
Accelerating Early Detection and Treatment for Myositis Through Awareness and Research Innovation
Our Mission
To accelerate early detection and advance treatment options for Myositis through targeted awareness programs for patients and healthcare providers and supporting cutting-edge research – with specialized emphasis on Anti-MDA5 Dermatomyositis and Interstitial Lung Disease.
Our Vision
A world where myositis conditions are detected early through increased awareness and advanced diagnostic tools, and where patients have access to innovative, effective treatments developed through accelerated research.
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The Challenge: Diagnostic delays in myositis conditions average 2-3 years, leading to increased morbidity and mortality. Limited research funding and fragmented efforts prevent rapid advancement in care.
50%
Research Investment
35%
Research Investment
2-3
Years Average Diagnostic Delay
Strategic Pillars
Patient & Provider Awareness
Objective: Increase awareness and education to improve early detection and care coordination.
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Symptom recognition campaigns
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Healthcare provider CME training
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Diagnostic decision support tools
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Peer support networks
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Multilingual resources
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Digital storytelling platform
Research Acceleration & Innovation
Objective: Accelerate development of innovative detection methods and effective treatments.
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Early detection research grants
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AI diagnostic tool development
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Targeted therapy research
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Clinical trial facilitation
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Patient registry development
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Academic partnerships
Success Metrics & Expected Impact
Reduced
Time to
Diagnosis​
1000+
Providers Trained Annually
10+
Research Projects Funded
5000+
Patients
Educated
Implementation Timeline
Year 1: Foundation
Establish governance, recruit staff, launch initial programs, develop partnerships
Year 2: Launch
Expand awareness campaigns, launch research initiatives, establish training programs
Year 3: Scale
Geographic expansion, major research collaborations, establish leadership position
Core Values
Patient-Centered
Every decision prioritizes patient needs
Collaboration
Building bridges across stakeholders
Scientific Excellence
Rigorous, evidence-based solutions
Transparency
Open communication about impact
Urgency
Time is critical for rare disease patients
Access
Ensuring equity across communities