EXECUTIVE OVERVIEW
OUR MISSION AND PROMISE
The Children’s Rare Disease Network will create greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.
RARE DISEASE IS NOT SO RARE!
A rare disease by definition afflicts less than 200,000 people with over 7,000 of these diseases currently identified. However, approximately 5,000 of those diseases are considered ultra-rare affecting 6,000 people or less. This can make it difficult to find a diagnosis and treatment. It can also create substantial financial burdens for families. Charities and researchers seeking funding often find it difficult to garner the attention and the resources they need because the diseases they focus on may affect so few people. The reality though, is that there is nothing rare about rare diseases. While individually they affect few people, there are more 25 million children and their families in the US alone that are affected with approximately 250 million people diagnosed with a rare disease worldwide.
WHAT WE ARE WORKING ON
The Children’s Rare Disease Network has built an online community where children with rare diseases, their families, and the organizations that support them will have the opportunity to communicate, collaborate, become educated and tap existing resources, helping them with their daily challenges. Children and their families need information, resources and a coherent voice to speak to issues common to children who suffer from a rare disease. The Network will seek to work collaboratively with other organizations and raise the profile of the problems faced by people with rare diseases so that more funding can be directed into this area of great need.
The Network will work with skilled journalists, subject matter experts, advocacy organizations and parent advocates to build and establish a central website with focused content about research, policy and other developments around rare disease initiatives for individuals and the organizations that support them. The Network will serve as an online home for people with rare diseases that will bring together families, organizations, physicians and researchers to exchange information and to help each other. Additionally, The Children’s Rare Disease Network will raise awareness about the prevalence of rare diseases through innovative public awareness campaigns that will benefit the entire community as a whole.
