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 neuromyelitis optica spectrum disorder (NMOSD) and other rare neuroimmune conditions.
Cori will share how PHA, formerly the patient advocacy team of the Guthy-Jackson Charitable Foundation, has built sustainable and scalable programs that support the mental health and emotional wellbeing of individuals and families living with NMOSD, a rare autoimmune disease. Recognizing the prolonged isolation and emotional strain experienced by the immune compromised community after COVID, PHA expanded from virtual peer support groups to innovative creative wellness programming and, most recently, the development of an accessible mental health toolkit. These collaborative programs are designed to complement medical treatment by addressing the emotional, social, and practical realities of living with rare disease, areas often unaddressed elsewhere.
JOIN US:
Thursday, March 26, at 12:00pm EST
Via zoom: https://us06web.zoom.us/j/85272508799
This session will emphasize how understanding your community’s lived experience is essential to designing meaningful and sustainable advocacy programs.
About Cori Woolf
Cori brings more than 25 years of patient-support experience, blending her background as a caregiver, rare disease advocacy leader, and former business owner with a deep commitment to equity, connection, and patient-centered care.
She 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 also 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.
About PHA
The Patient Health Alliance is a nonprofit organization comprised of a coalition of patients, caregivers, clinicians, researchers, industry and beyond. It specializes in three areas that focus on neuromyelitis optica advocacy, education, and research. Its mission is to support a patient-centered approach to improving health and wellness through advocacy, education and research.
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 programs are built and sustained.