Rare Disease Lobby Day: Write Your Story for Congress

Rare Disease Lobby Day

Have you ever wanted the chance to be heard in Congress about how Rare Disease has affected you and/or your family?

Through science-driven public policy, the EveryLife Foundation for Rare Diseases is committed to increasing biotech innovation for rare disease treatments.  Please read their message below about how your rare disease organization can participate in RARE DISEASE DAY 2014:

Message from the Everylife Foundation:

If you are unable to join us in Washington DC, but want to make sure Congress hears your story, our event partner Global Genes | RARE Project is collecting patient stories that fellow patient advocates will hand deliver to your Members of Congress. Please click here to ensure Congress knows what issues are most important to you! Submission Deadline: February 12, 2014