By Robert Ostrea As an involuntary member of the rare disease community (my youngest daughter, Hannah, was diagnosed with a rare, genetic disease shortly after birth), I have been fairly active in participating in events and organizations geared towards raising awareness of as well as educating people in positions of power (elected officials) about the…
Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.