Some may think it’s all right or even supportive to temporarily take a group of struggling students out of the…
Articles by Richard E. Poulin III
Two parents, unbeknownst to them, were carriers of a rare disease. They were shocked to learn about this…
As a baby, our daughter, Rylae-Ann, had very poor muscle tone. It was barely enough to sustain her body. When…
When my daughter, Rylae-Ann, was born, my wife, Judy, and I celebrated as all new parents do. We took photos…
This Rare Disease Day, I spent time reflecting on the future of our community. Will all the hashtags and…
Our daughter, Rylae-Ann, went through a diagnostic journey for eight months until we finally discovered, by chance,…
As soon as the car pulls up to the hospital, crying and ear-piercing screaming commence. My daughter arches her back…
During a workshop for rare disease caregivers, a fellow parent reminded me that while therapy and activities are great topics…
Our daughter, Rylae-Ann, has a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. Caring for a rare…
When our family’s rare disease journey began four years ago, we felt alone. Part of the reason…