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.
NORD will highlight these individuals in a Portraits of Courage Gallery and throughout the evening, both for their own outstanding achievements and as representatives of the courageous spirit of countless others in the rare disease community. The photos and stories will later be posted on the NORD website.
Honorees to Include Two Members of Congress for Advancing Pediatric Research
Honorees will include Senator Sherrod Brown (D-OH) and Representative Fred Upton (R-MI) for their commitment to issues of importance to the rare disease community. The two members of Congress are also being honored at this time specifically for their leadership in sponsoring the National Pediatric Research Network Act of 2013, which authorizes the National Institutes of Health (NIH) to establish up to 20 pediatric research consortia and encourages collaboration among researchers.
NORD Member Organization to be Honored
The MPN Research Foundation will be honored for its service to its members and its support for the broader rare disease community through partnership with NORD on advocacy, educational and awareness initiatives. Established in 1999, the Foundation is a longtime member of NORD.
The Foundation will receive NORD’s Abbey S. Meyers Leadership Award, presented annually to a member organization. The award was established at the time of the retirement of NORD’s founding president and now President Emeritus, Abbey S. Meyers.
Lifetime Achievement Award to be Presented
John Walsh, co-founder, president and CEO of the Alpha-1 Foundation, will be presented a Lifetime Achievement Award for his innovative, entrepreneurial, and patient-centric service to Alpha-1 patients and the broader rare disease community.
Sponsors of Novel New Orphan Products Approved in 2013 to be Honored
The year 2013 was a record year for orphan product approvals, with a total of 31 FDA approvals for first and additional indications. NORD and its members salute all sponsors of orphan products approved in 2013. Special acknowledgement will be made at the gala for specific novel new drugs offering new treatment options for rare disease patients. View the press release.
Rare Disease Report to be Event Media Partner
Rare Disease Report is a media partner with NORD for this event. Representatives of RDR will be conducting onsite video interviews at the NORD gala on topics of interest to the community.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
Translate This page:
SUBSCRIBE TO OUR E-NEWS