Rare Disease Day 2021
It’s Rare Disease Day! Today, I’m wearing stripes to acknowledge those living with a rare disease. A disease is a “disorder of structure or function in a human…especially one…
What Matters to Me
It’s been a year since Love What Matters reached out and asked to share my story. My thoughts and words from this passage are still…
Growth Awareness Day
Did you know today is Growth Awareness day? This year, The Chandler Project partnered with Ascendis Pharma to invite patients and families of children with achondroplasia to…
Virtual Achondroplasia Research Conference
Register for the Virtual Achondroplasia Research Conference on Saturday, September 5 at 9 a.m. Eastern Standard Time. The conference agenda is filled with information and…
Rare Disease Day on Capitol Hill
Today is #RareDiseaseDay – a day for advocating, not really celebrating IMO. Let’s celebrate our differences by who we are as individuals, not by our…