Kielan Wilson-Premo, a member of FCF’s Patient & Caregiver Advisory Board, recently shared his perspectives on mental health issues for patients facing a rare disease diagnosis and treatment. On October 17, Kielan served as a panelist for a discussion on “Mental Health and Rare Cancers” at the National Organization for Rare Disorders’ (NORD) annual Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC.

As an adolescent who dealt with FLC, Kielan discussed how the ‘rare’ aspect of his cancer made it even more isolating. Based on his experiences, he  recently founded Youth Buddies, a Washington state-based non-profit that provides emotional support and community connection for adolescents and young adults challenged with cancer, mental health, or addiction.

Click here to learn more about Youth Buddies.