Every weekday, the entire staff at Crescent Cove gathers around and shares information about the day and the children being cared for in the Home. One nurse may explain that a child has seizures when startled and to not start a blender or loud appliance without first letting them know. Someone else may share that they are caring for a child who loves to socialize and if anyone has some time to play a game of Uno, that would be a welcome activity.
One thing you’ll never hear during this brief update session — a child’s diagnosis. Our team is focused on ensuring that every child has the “Best Day Ever” while at Crescent Cove, and that means knowing their needs, not their diagnosis. And yet, one thing that many children who come to Crescent Cove have in common is that they were diagnosed with a rare disease, which is why we are recognizing Rare Disease Day this year.
A disease is considered rare when less than 1 in every 2,000 people have that condition. These rare diseases often defy diagnosis, leaving families without answers for months or even years before a diagnosis is finally made. Some facts about rare diseases:
- More than 300 million people worldwide are living with a rare disease; collectively, these people are equivalent to the 3rd largest country in the world!
- Rare diseases affect 5% of the world’s population.
- There are more than 6,000 different known diseases that are considered rare.
- 72% of all rare diseases are genetic.
- 70% of all genetic rare diseases start in childhood.
Rare Disease Day aims to bring awareness to people living with rare diagnoses and ensure equitable access to diagnosis, treatment, health, social care, and opportunity. We are grateful for all of the families of children with rare diagnoses who have discovered Crescent Cove and allow us to be a part of your extended family, caring for your children and creating memorable experiences for them. We all deserve the “Best Day Ever” and at Crescent Cove we work hard to make that possible for all who enter.