pkan.portal
a community for families
living with PKAN
community profile

Diana’s family

North Carolina, USA
English · Korean
recently diagnosedopen to messagesresearchfundraising

Our story

Diana was diagnosed with PKAN when she was very young. Our family is still learning what this diagnosis means, and we are trying to balance the reality of the disease with the joy and possibility of her everyday life.

We joined this community because we wanted to find other families, share what we are learning, and stay close to the research. We are especially interested in gene therapy, fundraising, and connecting with families who are newly diagnosed.