Written by Griffin Becker, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease. When my sister was first diagnosed nearly a decade ago, there was virtually no support in Southern Nevada. There wasn’t even a pediatric rheumatologist in town to treat her. I think connecting parents, children, health care providers, advocates,…
Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.