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.

Honored guests at the event will include Alexandria and Samantha Bode of Connecticut, two sisters living with Friedreich's ataxia; Sarah Kennedy and her daughters, Brooke and Brielle, from Michigan whom Representative Fred Upton credits with helping inspire his commitment to advancing pediatric research; PNH patient Joe Ellenberger of Nebraska and many other rare disease patients and family members.

Read More: "Portraits of Courage" to Honor Spirit of Patients and Families at Annual NORD Gala