Seventeen years ago, after my daughter was diagnosed with a rare disease, I started MADISONS Foundation in response to an absence of information and community regarding my daughter’s condition.
The Internet was still in its relative infancy and the result of our efforts was that hundreds of thousands of parents of children with rare pediatric diseases were able to find information and community to help them deal with the difficulty of their child’s illness.
Today, seventeen years later, the Internet is massive. The information and community that we struggled to gather and disseminate is now easily accessible through numerous rare disease databases and charitable organizations, and the availability of community had been made possible through social media.
We are proud that MADISONS Foundation was able to provide the extraordinary benefit that it did for so long and for so many, but now it is time for us to step aside and allow the next generation of support to take over.
Below I have included links to those websites (in alphabetical order) that I believe are continuing to provide the next generation of support for parents with sick kids.
Thank you all for your years of support and may God bless you all.
Centers for Disease Control and Prevention
Click on Parent Information
National Organization for Rare Disorders
The Hospital for Sick Kids
At top left side of page, click on Health A-Z, and then click on the appropriate letter for the disease you want.