Thank You to Our Presenting Sponsor

images

Hosted By

rdla-logo-1

Proceeds Fund

rare-disease-week-on-CH-logo-with-ribbon-

The Abbey

eli_20121114_0394-1024x681The “Abbey” represents the “rare voice” speaking on behalf of patients, especially children, who might not otherwise be heard.

The award, with her blessing, was named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD).

Mrs. Meyers received the lifetime achievement award at the inaugural RareVoice Awards Gala for her vital role in the passage of the Orphan Drug Act in 1983.

The statue was commissioned for the RareVoice Awards Gala from the renowned sculptor Nobe who specializes in bronzes.

Nobe’s brilliant technique and original approach endow his figures with a sense of mystery and wonder that permeates the physical essence of the sculptures and brings each piece to life.

The Arena Stage is located at 1101 6th Street, SW, in Washington, DC.  The evening schedule is as follows:

6:00 p.m. to 8:00 p.m. Cocktail Reception

8:00 p.m. to 9:00 p.m. Awards Ceremony

9:00 p.m. After Party Celebration

Nominations are closed!

2016 Nominating Committee

RareVoice award recipients will be chosen by a small, hand-picked committee consisting of members of the rare disease community who are champions in their own right. The committee contains individuals from patient organizations as well as industry. The 2016 nominating committee is:

Ronald J. Bartek (2015 RareVoice recipient)
Co-Founder/Founding President
Friedreich’s Ataxia Research Alliance (FARA)

David Eckstein
Senior Health Scientist Administrator
Office of Rare Diseases Research
National Center for Advancing Translational Sciences, NIH

Cheryl Jaeger
Principal
Williams & Jensen

Mark Dant
Executive Director
National MPS Foundation

Mark Lenker
U.S. Government Relations and Public Policy Lead
Shire Pharmaceuticals

Thank you to our sponsors:

unnamed