Who Are We?
Who we are
The PBC Research Foundation (PRF) stands apart from other registries and data collection sources by ensuring that all patient data is fully owned and controlled by the patients themselves. Unlike traditional registries that often limit participation to clinical trial patients or select groups, PRF captures data from all PBC patients, creating a comprehensive and inclusive dataset. Our secure, regulatory-compliant database not only collects medical records but also digitizes and imports them free of charge on a weekly basis, ensuring real-time accuracy and accessibility. Additionally, PRF integrates biospecimens alongside real-world natural history data, offering a complete and unbiased view of disease progression and treatment response. Through our patient-first approach, we prioritize transparency, collaboration, and direct engagement with scientists, industry partners, and clinicians to drive meaningful advancements in PBC research and treatment.
Cecilia Dueñas Fryckman, Psy.D
CEO and Advocate for Rare Liver Disease Research and Health Equity
Dr. Cecilia Dueñas Fryckman is a bilingual Spanish/English Latina Clinical Psychologist, mother of two, and wife based in Southern California. Diagnosed with Primary Biliary Cholangitis (PBC) in 2021 after more than six years of undiagnosed symptoms and healthcare inequities, she turned her personal journey into a mission to advocate for patients facing rare liver diseases and health disparities.
Cecilia’s lived experience as a Latina navigating a rare disease inspired her to share her story to empower others. Her advocacy began as a patient ambassador with the Global Liver Institute (GLI), where she graduated from the Advanced Advocacy Academy (A3) in 2023 and participated in panels, webinars, and patient education initiatives in both English and Spanish. She has collaborated with major stakeholders, including Intercept Pharmaceuticals and Ipsen, contributing to educational campaigns, patient panels, and videos aimed at increasing awareness and understanding of PBC among clinicians, researchers, and patients.
Recognizing a significant gap in the representation of patient-owned, regulatory-compliant data—particularly for underserved populations like AMA-negative Latina PBC patients—Cecilia founded a PBC-focused research foundation in 2024. Her foundation prioritizes non-biased, patient-centered data collection and works in collaboration with regulatory boards, clinicians, and PBC stakeholders to advance research and treatment options for all patients.
Cecilia’s contributions to the PBC and liver health communities include:
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Participation in patient education videos and webinars addressing barriers to diagnosis and health equity (2021–2024).
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Presenting at the American Association for the Study of Liver Diseases (AASLD) in 2024 on the neurobiochemistry of self-help.
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Featuring in Ipsen’s patient education campaigns, including a Hulu and Netflix commercial in 2024.
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Founding a PBC research foundation in 2024 to bridge data gaps and support innovative treatments.
Through her advocacy and leadership, Cecilia strives to ensure that all PBC patients, particularly those from underrepresented communities, have a voice in advancing research, education, and equitable healthcare practices.
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