LGS Foundation attends Rare Disease Week on Capitol Hill
Every year, the EveryLife Foundation brings together the rare disease community for Rare Disease Week on Capitol Hill. This year, six LGS caregivers joined the efforts to share their voices with members of Congress, network with other rare disease patients and caregivers, and learn about current policy proposals impacting the rare community.
"We had an audience with the lawmakers. Our voices do make a difference and we have to believe that change will not take place unless families like ours are willing and able to engage with the decision-makers. Remember, they work for us." - Jen Griffin, Director of Family Support