thereishope Posted April 28, 2009 Report Share Posted April 28, 2009 http://theprojectcharity.org/about/about.php I stumbled on this charity a few months ago. It's called The Project Charity.I contacted them and asked whether they had a database where I could contact otehr families dealing with PANDAS. They said that they are a new charity and that is one of their goals...to create a database where you can network with others. I believe they had not heard of PANDAS before I contacted them. If have a moment, I would suggest visiting their website, telling them your story, and giving them your name. They want to help children with rare diseases by connecting parents with appropriate doctors, giving finanacial support to research, etc. Here's a brief overview of what they say on their website... http://theprojectcharity.org/about/about.php 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. THE PROBLEM 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 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 than 6,000 rare diseases affecting over 25 million children and their families nationwide. THE SOLUTION The Project 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, 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 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 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. The Project will raise awareness about the prevalence of rare diseases, by providing a platform that will allow these people to share common problems, provide access to relevant information, and create introductions to those who can help. Link to comment Share on other sites More sharing options...
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