Resources for Patients

Living with a rare, undiagnosed or medically complex condition means that you likely have experienced unexpected challenges in your journey for diagnosis and care. We hope the information and resources compiled here will be useful tools to help you and your family.

Article by Jessica Shriver, Medical Ethicist

From the article:

“My professional insight is built on my own caregiving experiences because both of my children were born with a complex rare disease that can shorten life expectancy. My daughter, the more affected child, died shortly before age five. My son is stable at the age of 12 years, albeit with a high level of care. A total of 15 years of parenting medically complex children with LLCs (life-limiting conditions) has been the most intense and exhausting experience of my life.”

Shriver J. Cost of Caregiving on Parents of Children With Medical Complexity and Life-Limiting Conditions. Pediatrics. 2021;148(1): e2021050222 https://publications.aap.org/pediatrics/article/148/2/e2021050222/179965/Cost-of-Caregiving-on-Parents-of-Children-With

Article by Maxine Eichner, Graham Kenan Distinguished Professor of Law, University of North Carolina School of Law

Eichner, Maxine, When the Helping Hand Hurts: How Medical Child Abuse Charges Are Undermining Parents’ Decision Making Rights over Children’s Medical Care ( 2022). 35 Journal of the American Academy of Matrimonial 23, UNC Legal Studies Research Paper No. 4419036, Available at SSRN: https://ssrn.com/abstract=4419036