#RareAware Roundtable: Assessing Maternal and Neonatal Needs in Liver Health
In this roundtable, our host, Donna Cryer, is joined by guests Lisa Coscia, RN from Transplant Pregnancy Registry International; and Aireen Turner, an ICP Care board member and patient.
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#RareAware Roundtable: Patient Advocacy in Rare Liver Disease
In this roundtable, our host, Donna Cryer, is joined by guests Jennifer Lau, president and CEO of BARE Inc.; and Donna Buenavides, president and board chair of ICP Care to discuss the patient advocacy work they have taken on in the past few years in order to change the landscape of the rare liver community.
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#RareAware Roundtable: Parents and Partners
In this roundtable, our host, Donna Cryer, is joined by guest Kara Ayik, the mom of Evren, a rare disease patient who has inspired Kara to write a book that helps other families and kids understand how special they are. Also joining us is Alex Summers, a partner and caregiver of Cristina Summers, a patient who experienced preeclampsia; and Jordan Sarbaugh, the co-founder and VP at BARE Inc, to share their experiences and insights into the world of rare liver diseases.
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#RareAware Roundtable: The Provider Perspective on Patient Access
In this roundtable, our host, Donna Cryer, is joined by guests Dr. Kathleen Schwarz, a pediatric hepatologist at Rady Children’s Hospital in San Diego and Dr. Laura Bonebreak, an OB GYN and medical advisor at ICP Care to talk about access to care and healthcare navigation in maternal, neonatal, and pediatric health care.
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