National Organization for Rare Disorders to Honor LGDA Patient and Mother
NORD to Present Awards at “Portraits of Courage” Celebration, May 8, 2014, in Washington DC
Rare disease patients, patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the “Portraits of Courage Celebration” of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum in Washington DC.
“We’ll be highlighting the stories of patients and families who live with rare diseases and demonstrate great courage in the face of enormous challenges,” said NORD President and CEO Peter L. Saltonstall. “We look forward to honoring those who have driven major advances in public policy and scientific achievement over the past year while also celebrating the spirit of the rare disease community.” LGDA patient Ryan Diskin, 10 year-old boy of Mountainside, NJ, and his mother, Kate Diskin, will be among those honorees as “Portraits of Courage”.
Ryan has been taken to no less than 12 hospitals and his case has been reviewed by some 18 doctors specializing in our rare disease field. He has had a number of surgeries, and been in very grave health more than once. He still does not have a ‘confirmed’ diagnosis. His case was recently declined by the NIH office of Undiagnosed Disease Program. Ryan and his mother are a hallmark in courage. She is a school principal in NJ. Kate recently represented the LGDA and the Rare Bone Disease Patient Network on Capitol Hill, urging Congressional for support for restoring NIH funding levels and for focus on rare bone disease research. She was particularly encouraged by U.S. Representative Rodney Frelinghuysen’s (NJ-11) interest in the burden and the journey of rare diseases patients.
NORD’s celebration of progress is an annual event open to everyone with an interest in rare diseases and orphan products. Approximately 500 people attend each year, representing a cross-section of the rare disease community – medical clinicians and researchers, patients and patient advocates, and individuals from government, academia and the pharmaceutical industry.