The State of Rare Autoimmune Diseases in Women
August 14, 2026 @ 11:00 am - 12:00 pm EDT
Autoimmune diseases occur when the body’s immune system mistakenly attacks its own healthy cells and tissues. More than 80 autoimmune diseases have been identified, and women are disproportionately affected, accounting for nearly 3 out of 5 patients diagnosed with autoimmune conditions. Many autoimmune diseases are also classified as rare diseases, defined as conditions affecting fewer than 200,000 people in the United States. Despite their significant burden on women’s health, rare autoimmune diseases remain underrecognized and under researched, contributing to gaps in understanding disease mechanisms, diagnosis, treatment options, and long-term management strategies.
SWHR will host a webinar focused on the current state of clinical care, research, and policy impacting women living with rare autoimmune diseases. The discussion will highlight the importance of holistic, lifespan-oriented care approaches while exploring the complex interplay between immune health, hormonal changes, comorbid conditions, and barriers to equitable diagnosis, treatment, and care access.
Goals
- Identify common barriers to diagnosis, treatment access, and coordinated care experienced by women living with autoimmune diseases
- Recognize the impact of rare autoimmune diseases on quality of life, mental health, caregiving, employment, and long-term health outcomes
- Highlight federal policies that present barriers and opportunities for access to quality care and coverage
- Examine the evolving research and clinical care landscape surrounding rare autoimmune diseases in women
Are you interested in seeing more of this type of educational programming on women’s health from SWHR?
Panelists
Holly Jones
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.
Jenifer Waldrop
Jenifer Waldrop
Jenifer Waldrop is a visionary leader in rare disease advocacy, championing health equity, and ensuring every patient’s story shapes the future of care. As Executive Director of the Rare Disease Diversity Coalition (RDDC), a program of the Black Women’s Health Imperative (BWHI), a role she has held since October 2022, she leads transformative efforts to expand access, representation, and trust across diagnostics, clinical research, and treatment pathways. Jenifer’s career reflects a deep commitment to collaboration, from her time at the American Cancer Society to her tenure at for-profit organizations. She forges powerful partnerships among patient communities, industry innovators, and government leaders. Guided by a human‑centered approach, she amplifies marginalized voices and inspires collective action, while mobilizing diverse networks to drive awareness, unlock opportunity, and build a more equitable healthcare ecosystem for all.
Sponsor
Support for this educational program has been provided by Johnson & Johnson. SWHR maintains independence and editorial control over program development, content, and work products.
