Our Impact

Every step we take brings us closer to awareness, better treatments, and hope for those affected by Anti-MDA5 Dermatomyositis.

Our First Grant!

The Myositis Clinical Trial Consortium (MCTC) is revolutionizing research and care for myositis patients worldwide. By uniting top clinical investigators, researcher professionals, patient advocates, MCTC will drive groundbreaking advancements in facilitating, promoting, coordinating, and conducting clinical trials to transform the lives of those impacted by Myositis.

Nori’s Fight will be supporting MCTC in obtaining their 501(c)(3) status so they can make a real impact. Join us in helping them accelerate hope and progress!

Partnering with UCSF to bring education and treatment to San Francisco

Building framework for a Myositis Center

Nori’s Fight is proud to collaborate with the University of California, San Francisco (UCSF) to lay the foundation for a dedicated Myositis clinic.

This partnership represents a critical step toward improving care, advancing research, and providing specialized resources for patients affected by this rare and often misunderstood disease. By working alongside leading experts, we are committed to developing a center of excellence that will drive innovation in diagnosis, treatment, and long-term patient support.

Together, we are building a future where those affected by Myositis receive the comprehensive care they deserve.

Planning Educational Programming

Nori’s Fight is partnering with UCSF and TMA to host an event in 2026, bringing a Myositis expert from a top institution to San Francisco. This gathering will be a pivotal opportunity to develop educational programs that enhance physician training, improve patient care, and advance research in Myositis. By conne leading specialists, we aim to foster collaboration and lay the groundwork for a stronger, more informed medical community dedicated to this rare disease.

We Care for Rare Summit 2025

In response to the FDA and NIH postponing their Rare Disease conference in Feb, we partnered with The Myositis Association and MIHRA, to host the the We Care for Rare Summit—a virtual forum dedicated to sharing patient stories and research breakthroughs. This event brought together experts, advocates, and those affected by rare diseases to drive awareness and collaboration.

Within a week we had over 400 registrants and over 250 attendees from 12 countries. What a huge accomplishment!

Our President and Co-Found Julia Nickerson, shared Nori's story and our friend Lindsay Guentzel shared her personal journey and insights, highlighting the importance of patient advocacy and research in the rare disease community as the keynote speaker.

If you missed it, check it out below!