What is the New York State Rare Disease Collaborative?

In 1965 there was little treatment for people with bleeding disorders. Those with serious symptoms had an average life expectancy of 40 years and often suffered disabling complications. Thanks to decades of research and community advocacy that's changed. Today, people with bleeding disorders have a wide range of treatment options and the opportunity to lead long, active lives.    

The experience taught us that while having a rare disease means your life will look different than other people's lives, your life doesn't have to be less than. We also learned along the way that other people with rare diseases face many of the same challenges we did, and sometimes still do. 

We have what we do thanks to the hard work of others. Now it's our turn to give back. Our goal for NYSRDC is to share what we know, and work with the wider rare disease community to make life better for all of us.  

NYSRDC is a project of the Bleeding Disorders Advocacy Network for the New York State Bleeding Disorders Coalition. Click here for more information.