The Autoimmune Registry hosts a monthly webinar series bringing together leaders across patient advocacy communities. This month, we are honored to welcome Cori Woolf, Director of Patient Advocacy at Patient Health Alliance (PHA), where she leads the advocacy team and oversees strategy, program development, community engagement, and initiatives that support individuals and families affected by NMOSD, MOGAD, and rare neuroimmune conditions. Cori will share and discuss how patient advocacy translates into meaningful mental health and wellness support by designing scalable programs that address the emotional and social realities of living with rare autoimmune disease.
Mental health and emotional wellbeing are critical yet often overlooked aspects of chronic disease care. This conversation explores how patient-centered programs can bridge that gap.
Attendees will gain:
Insight into building sustainable mental health and wellness programs for rare disease communities
Real-world examples of innovative programming — from peer support groups to creative wellness initiatives
Understanding of how COVID-19 reshaped mental health needs in immunocompromised communities
Practical strategies for developing accessible mental health toolkits
Perspective on designing advocacy programs informed by lived experience
About Cori Woolf
With more than 25 years of patient-support experience, Cori brings a unique blend of expertise as a caregiver, rare disease advocacy leader, and former business owner, all grounded in a deep commitment to equity, connection, and patient-centered care.
Her leadership includes:
Leading national and international programs supporting the rare disease community
Developing educational events, volunteer leadership development, and peer mentoring initiatives
Creating wellness-centered programming that addresses mental health and emotional wellbeing
Serving as Director of Patient Advocacy at The Guthy-Jackson Charitable Foundation, building successful multi-organization collaborations
Speaking at national conferences, industry-sponsored events, and educational programs
Moderating inclusive discussions that amplify patient and caregiver perspectives
Cori has led national and international programs supporting the rare disease community, including educational events, volunteer leadership development, peer mentoring initiatives, and wellness-centered programming.
She is a frequent guest speaker at national conferences, industry-sponsored events, and educational programs, known for her ability to moderate robust, inclusive discussions that amplify the patient and caregiver perspective.
"Understanding your community's lived experience is essential to designing meaningful and sustainable advocacy programs."
Cori works closely with international neuroimmunologists and researchers, nonprofit organizations, community partners, and industry leaders —
to bridge the gap between individuals living with rare disease and the scientific, clinical, and advocacy ecosystems that support them, ensuring patient experience informs progress, innovation, and meaningful change.
Her work centers on strengthening support systems, improving equitable access to resources, empowering patient leadership, and cultivating spaces where all individuals feel seen, supported, and connected.
“I know that by working together we can continue to improve medical care by conveying the patient perspective while engaging with various stakeholders, including clinicians, regulators, and the research community."
About PHA
The Patient Health Alliance is a registered nonprofit organization dedicated to supporting individuals and families affected by rare neuroimmune conditions. Its mission is to inform, assist, and support people affected by NMOSD, MOGAD, and related disorders.
PHA works with patients, families, physicians, nurses, practitioners, investigators, regulators, employers, and others to broaden understanding about rare neuroimmune conditions, support and encourage research, and improve care in adults and children. Patient Health Alliance continues to address the many patient needs that remain unmet in the rare disease community.
If you work in patient advocacy, clinical research, healthcare policy, or live with chronic illness, this conversation will provide meaningful insight into how patient-centered mental health support systems are built and sustained.