I’m a parent of an 14 year old boy with cystic fibrosis (CF). In 2014 I had the opportunity to join LPCH Family Centered Care and have learned how to provide input from a parent perspective as a way to partner with staff to improve the family experience as a whole. I was also trained […]
As the parent of a child with a rare disease, the work of PEDSnet is deeply important and relevant. I have learned a lot in the years managing my son’s care, especially the importance for having trust and open communication between patients and providers. I have valuable insights to offer and feel fortunate to work […]
Melissa brings her real life experience as she navigates care for her son with a rare and chronic disease. Before her son’s sudden onset diagnosis, Melissa worked in homes, schools and communities with children, famlies and caregivers as an Early Childhood Special Educator and Early Childhood Autism Specialist. Melissa provides the family’s voice to clinicians […]
