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NORD TO HONOR RARE DISEASE HEROES AT 30TH ANNIVERSARY CELEBRATION

Momentous Event to Highlight Historic Past, Promising Future

Momentous Event to Highlight Historic Past, Promising Future

Honoring the heroes of the past and innovators of the future, NORD will host a 30th Anniversary Celebration for the entire rare disease community on Tuesday, May 14.  This momentous occasion will provide an exciting opportunity to celebrate the history and lasting impact of both the Orphan Drug Act and NORD.

“Since 1983, the rare disease community, with NORD as a unifying force, has accomplished amazing things,” said NORD President and CEO Peter L. Saltonstall.  “We look forward to honoring the heroes from all sectors of the community who have driven progress over the past 30 years.  And we also anticipate an evening that will inspire future innovation as we hear first-hand from patients and families living with rare diseases.”

The Orphan Drug Act of 1983 launched a new era in the development of therapies for people with rare diseases.  Established by patient advocates at the time the law was enacted, NORD has been at the heart of rare disease activity over the years, working with partners in patient organizations, government and industry to bring meaningful advancements for patients.

Honorees for the NORD 30th Anniversary Celebration will be:

For Leadership in Public Policy

These awards honor public officials for leadership that has improved the lives of millions of Americans living with rare diseases.

  • William Corr, Deputy Secretary, U.S. Department of Health and Human Services
  • The Honorable Nancy Kassebaum (U.S. Senate, retired)
  • The Honorable Henry Waxman (U.S. House of Representatives)

For Vision and Pioneering Guidance

These awards honor pioneers in the patient community, government and industry for years of service to rare disease patients and their families.

  • Stephen C. Groft, PharmD
  • Marlene Haffner, MD, MPH
  • Lars Uno Larsson
  • Abbey S. Meyers
  • Jess G. Thoene, MD

For Innovative Orphan Products Approved in 2012

These awards honor companies that brought important and innovative treatments to market during the previous year.

  • Aegerion Pharmaceuticals, Inc.
  • NPS Pharmaceuticals, Inc.
  • Onyx Pharmaceuticals, Inc.
  • Sigma-Tau Pharmaceuticals, Inc.

This year’s Gala promises to be a truly inspiring and motivating evening of commemoration and festivity for the entire rare disease community that will include nationally recognized entertainers.

REGISTRATION AND SPONSORSHIP

To reserve your seat at NORD’s 30th Anniversary Celebration, visit the online registration page .  (Patients, representatives of NORD Member Organizations, and invited government guests should contact Emily Fields to register at NORD30thanniversary@rarediseases.org or 202 588 5700 Ext. 111.)

Sponsorship opportunities are described in the online sponsorship guide.  Questions about sponsorship or advertising may be directed to Emily Fields, using the contact information provided above.

EVENT DETAILS

Date:              Tuesday, May 14, 2013

Time:              Reception at 6:30 p.m. and Dinner at 7:30 p.m.

Venue:            Andrew W. Mellon Auditorium, Washington, DC

Dress:            Black tie optional

 
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