Holly Jones

Holly Jones is the Founder of HERstory In Color (HSIC), a growing movement dedicated to advancing awareness, equitable healthcare, and community-informed, research-guided initiatives for women of color living with rare and chronic diseases. A nationally recognized patient advocate, speaker, author, host, and interviewer, Holly works at the intersection of lived experience, health equity, and community empowerment.
She serves as Chair of Development for The Myositis Association (TMA) and Secretary of the Community Resonance Foundation (CRF). Holly is also the Creator and Co-Leader of the Myositis Women of Color Affinity Group and Co-Creator of Myositis Men of Color and Myositis Africa. She collaborates across the rare disease ecosystem, including engagement with the Foundation for Sarcoidosis Research Coalition (FSR), the Rare Disease Diversity Coalition (RDDC), and recently joined the Rare Disease Working Group for the Society for Women’s Health Research (SWHR) to elevate underrepresented patient voices.
Diagnosed at age 19 with Polymyositis, Interstitial Lung Disease, and Pulmonary Hypertension, Holly brings more than two decades of lived experience to her leadership and advocacy. She resides in Houston, Texas, with her family.