We attended the Genetic, Rare, and Immune Disorders Symposium in Fairfax, Virginia, last weekend. Carrie, Hannah’s mom, was a speaker discussing the importance for families to get involved in advocacy for their rare disease communities. Robert, Hannah’s Dad, met with researchers and scientists to learn the latest advancements in rare disease treatments.
Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.