The Children's Rare Disease Network

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 diseases and by becoming a catalyst for funding their critical efforts.

An online community:

The Network is creating 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, in order to help and support them with their daily challenges.

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.

Advocacy for research:

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.

Information on research and policy developments:

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.

For more information about The Children's Rare Disease Network:

Web site: The Children's Rare Disease Network

email: info@theprojectcharity.org