Within the next week, we will officially be launching The Project - The Children's Rare Disease Network interim site. This will be a fully functioning site that will allow us to share what we will be building, the site capabilities, what content we will be aggregating and the partnerships we will be creating. It is a very exciting time for us, and a special thanks to Pike Design and those from the Project that have been working tirelessly to help get this off the ground!
Lots of momentum, so much potential we are at the onset of a huge movement that will have a tremendous impact on these children and their families. Thanks in advance for your generosity and help and for your willingness to embrace these efforts as your own. It takes a village!
All the best,
Nicole Boice
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Mission Statement
To impact the lives of children with rare disease, their families and the organizations that support them by building greater awareness related to the prevalence of Rare Disease and by becoming a catalyst for funding their critical efforts.
Why we exist
A rare disease by definition afflicts less than 200,000 people. 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 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 than 6,000 rare diseases affecting nearly 25 million people or one out of 10 people in the United States.
About 'The Project'
- The Project
- The Project will create 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. Introducing - The Children’s Rare Disease Network Children and their families need information, resources and a coherent voice to speak to issues common to people 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 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, physician & researchers to exchange information and help each other.
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