Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on advancing the development of treatments for Americans with unmet medical needs. read more >
The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.
With a Portraits of Courage theme, NORD will honor patients, parents and caregivers — many of whom will be present to participate in the program — at its annual gala on Thursday, May 8, at the National Building Museum in Washington DC. read more >
From Left to Right: Stephanie Bozarth, Andrew Emmett, Sandy Robinson, Peter L. Saltonstall, Richard Zyne, Charles Mohan
NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this briefing was very well received. read more >