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Rare Impact Awards


NORD is proud to host the 2016 Rare Impact Awards to bring together the rare disease community and to honor and celebrate outstanding achievements.  During the event we will recognize the individuals, organizations, advocates and companies that are moving us forward in the fight against rare diseases.




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2016 Honorees

Rare Impact Award Honorees

A childhood experience for Dr. Arthur Caplan provided him with a patient perspective, drawing him to complex issues that have led to him becoming one of the nation’s leading bioethicists. Learn more about Dr. Caplan.

Dr. Cederbaum, a devoted physician, is on a first-name basis with his patients who refer to him as a kind and compassionate friend and guide through the trauma of receiving a rare disease diagnosis. Learn more about Dr. Cederbaum.

A leading expert in her field, Dawn Laney, M.S., C.G.C., C.C.R.C. is a genetic counselor, instructor, and program leader at Emory University in the Department of Human Genetics.  She manages Emory’s infusion center and lysosome storage disease clinical research, and is a sought-after specialist in Fabry Disease. Learn more about Dawn.

As Executive Director of the APF, Desiree Lyon Howe has made an impact by building up the knowledge base and awareness for Porphyria. Learn more about Desiree.

Debra Miller co-founded CureDuchenne in 2003 with her husband, Paul, after their only son was diagnosed with Duchenne Muscular Dystrophy. With a background in sales and marketing, she leads CureDuchenne and has funded seven research projects that have advanced to human clinical trials. Learn more about Debra.

Noah is passionate about making the voice of rare diseases heard. Through advocacy and creative writing, she is educating medical students, and others, about rare disorders. Learn more about Noah.

Industry Innovation Honorees

For the development of Strensiq ™ for perinatal, infantile and juvenile-onset hypophosphatasia and for the development of Kanuma ™ for lysosomal acid lipase deficiency.

For the development of Cholbam ™ for bile acid synthesis disorders.

For the development of Cresemba ® for invasive aspergillosis and invasive mucormycosis.

For the development of Unituxin ™ for pediatric high-risk neuroblastoma.

For the development of Xuriden ™ for hereditary orotic aciduria.


Patients, caregivers, advocates, doctors, researchers, legislators, regulators, and public figures. People who make a positive impact on the rare disease community go above and beyond, overcoming certain obstacles, to help make meaningful change in the lives of others. They are making a rare impact.

NORD requested nominations of individuals that have made a positive impact on the rare disease community in 2015. Eligible Nominees included patients, caregivers, advocates, physicians, medical experts, researchers, media, educators, legislators, regulators, and others and their efforts to raise awareness and make a difference through education, media/social media campaigns, policy work, and community-building. Special value was placed on the Nominees that have made an impact on all rare diseases and rare diseases as a whole.

Nominations closed on Monday, February 1 at 8:00 A.M. EST.


Event Details

The Warner Theatre
513 13th Street Northwest
Washington, D.C. 20004

The Rare Impact Awards is a black tie optional event. A reception offering bountiful culinary selections will begin at 6:30 p.m. The Rare Impact Awards will begin at 7:30 p.m. A champagne and dessert celebration will follow.

Parking Information

NORD will be covering the cost of parking for this event at the following garage:
PMI Garage #20094 (located within the same building as the Warner Theatre)
500 12th Street, NW
Washington, DC 20004

Click here to see highlights from our 2015 event.
Click here to see highlights from our 2014 event.

The Warner Theatre in Washington. D.C.

2016 Sponsors

NORD thanks our sponsors for their generous support of the 2016 Rare Impact Awards

Benefactor Sponsor

Diamond Sponsor


Gold Sponsor

Silver Sponsors

Bronze Sponsors

Media Partners