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National Organization for Rare Disorders to Celebrate 30 Years of Achievement and Promote a Promising Future for the Rare



National Organization for Rare Disorders to Celebrate 30 Years of Achievement
        and Promote a Promising Future for the Rare Disease Community

30th Anniversary Gala to honor rare disease heroes and support the
continuation of NORD's critical work on behalf of the rare disease community

PR Newswire

WASHINGTON, May 10, 2013

WASHINGTON, May 10, 2013 /PRNewswire-USNewswire/ -- The 30^th Anniversary Gala
of the National Organization for Rare Disorders (NORD), to be held Tuesday,
May 14, 2013, will honor rare disease heroes, celebrate 30 years of progress
through the Orphan Drug Act (ODA) and NORD, and promote a promising future for
the rare disease community.

(Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b)

This seminal event will recognize important milestones since 1983 and
celebrate NORD's historic past and promising future.  For 30 years and
counting, working with dedicated partners in patient advocacy, government and
industry, NORD has been at the heart of rare disease activity, driving
initiatives and bringing meaningful progress to patients.

"As part of our year-long 30^th anniversary celebration, the Gala will pay
homage to past accomplishments, celebrate progress to date, and – most
importantly – reinforce our tradition of delivering results for the rare
disease community," said Peter L. Saltonstall, president and CEO of NORD.    

Through the support provided by sponsors, the Gala will make possible
continuation of NORD programs and services in advocacy, education and other
areas for the 30 million Americans with rare diseases, their families and the
organizations that serve them.  It will also enable NORD to extend its reach
and expand its impact in the future. 

The evening's program will recognize rare disease heroes who have touched
countless lives, including Representative Henry Waxman (D-CA), author of the
Orphan Drug Act, and other pioneers from government, patient organizations,
academia and industry. 

In addition, American Idol finalist and community advocate Siobhan Magnus, and
the widely acclaimed Howard University Jazz Ensemble, will be on hand to
provide the evening's entertainment.

Honorees for NORD's 30^th Anniversary Gala are:

FOR LEADERSHIP IN PUBLIC POLICY:

  o William V. Corr, Counsel to Congressional Subcommittee during Orphan Drug
    Act hearings and now Deputy Secretary, HHS
  o Senator Nancy Kassebaum (KS-retired)
  o Representative Henry A. Waxman (CA)

FOR VISION ON BEHALF OF PATIENTS

  o Stephen C. Groft, PharmD, Director of the NIH Office of Rare Diseases
    Research
  o Marlene Haffner, MD, MPH, Director (retired) of the FDA Office of Orphan
    Products Development
  o Lars-Uno Larsson, founder of Swedish Orphan International AB and early
    industry advocate for orphan product development
  o Abbey S. Meyers, advocate for the Orphan Drug Act and President of NORD
    for its first 25 years
  o Jess G. Thoene, MD, rare disease medical expert, advocate, and one of
    NORD's original medical advisors

FOR ORPHAN PRODUCTS APPROVED IN 2012

  o Aegerion, Inc., for Juxtapid for homozygous familial hypercholesterolemia
  o NPS Pharmaceuticals, Inc., for Gattex for short bowel syndrome
  o Onyx Pharmaceuticals, Inc., for Kyprolis for multiple myeloma
  o Sigma-Tau Pharmaceuticals, Inc., for Cystaran eyedrops for cystinosis

The Gala, to be held at the Mellon Auditorium in Washington DC, will begin
with a reception at 6:30 p.m. followed by dinner at 7:30 p.m.  For more
information, to register to attend, or to donate to NORD and support its
ongoing efforts on behalf of the rare disease community, please visit
www.rarediseases.org.

About Rare Diseases

A rare disease is any disease affecting fewer than 200,000 Americans.  There
are nearly 7,000 such diseases, of which only about 350 have FDA-approved
treatments, affecting nearly 30 million Americans.

About NORD

Established in 1983, the National Organization for Rare Disorders (NORD) is a
unique federation of voluntary health organizations dedicated to helping
people with rare "orphan" diseases and assisting the organizations that serve
them.  A nonprofit organization, NORD represents the 30 million Americans with
rare diseases and is committed to the identification, treatment and cure of
rare disorders through patient assistance, education, advocacy, research and
patient/family services.

For more information, please visit www.rarediseases.org.

SOURCE National Organization for Rare Disorders (NORD)

Website: http://www.rarediseases.org
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