It's Time For a Change: Advocating for Children with Rare Diseases

By Becky Abbott I’m frustrated and sometimes angry. I’m angry not only as a parent, but as a member of the rare disease community. Our journey started like so many other families who have children with rare diseases. It took several years, many doctor appointments and documenting symptoms. Finally, after being referred to a pediatric…

NFED Families on Capitol Hill

By Marc Steingesser NFED Liaison On Tuesday, September 29th, I represented the NFED on Capitol Hill along with Jeanne Wang and her son, Nollan, and Kristin Matus-Kelso and her daughter, Ally. We joined other rare skin disorder advocates and members from the American Academy of Dermatology (AAD) to share our concerns and issues with members…