Highlights: 

We shared facts and statistics on rare diseases and Rare Disease Day (an international awareness event) to highlight the urgency and importance of getting involved in rare disease advocacy to the attendees. 

Following this introduction, Shannon Bennett, a teacher turned rare disease mom and advocate, shared her powerful and deeply personal story of having a child affected by Megalencephaly-Capillary Malformation Syndrome, an ultra-rare disease caused by a mutation in the PIK3CA gene. 

After her experiences, she's dedicated to supporting other rare families through their journeys through the Rare Disease Network (Co-Founder) and Global Genes (Patient Navigator).