Navigation Links
NORD to Honor Rare Disease Pioneers
Date:5/11/2009

DANBURY, Conn., May 11 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) will honor a senior U.S. Senator, a top Administration official, a cutting-edge television network, and several pioneering companies developing treatments for rare diseases at the 2009 NORD Gala at the National Press Club in Washington, DC, on Thursday, May 14.

The NORD Gala is an annual event at which researchers and others are honored for significant achievements to improve the lives of people with rare diseases. NORD represents the nearly 30 million Americans who have rare diseases.

"We are honored to have this opportunity to pay tribute to pioneers in public policy, the sciences, and health-related education and awareness," NORD President and CEO Peter L. Saltonstall said. "These individuals and companies have demonstrated compassion and concern for what was once a forgotten community -- people who have diseases affecting small patient populations. We are happy to honor them for accomplishments that have literally saved lives."

In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are between 6,000 and 7,000 such diseases affecting nearly 30 million Americans. Many rare diseases are serious, life-threatening and chronic.

The 2009 NORD Gala honorees are:

  • Senator Edward Kennedy for lifetime achievement in health promotion leadership and for specific accomplishments on behalf of populations that are underserved by our nation's healthcare system
  • Social Security Commissioner Michael J. Astrue, J.D., for his focus on reducing the disability backlog and improving service to the public
  • Discovery Health, for educational programming that helps the public understand problems such as difficulty getting an accurate diagnosis that accompany having a rare disease
  • John I. Gallin, M.D., Director of the National Institutes of Health Clinical Center, for contributions as an excellent administrator, a caring physician, and a pioneering researcher
  • Bayer HealthCare Pharmaceuticals and Onyx Pharmaceuticals, for developing and bringing to market Nexavar(R), a treatment option for patients with a form of liver cancer known as hepatocellular carcinoma, when the cancer is inoperable
  • Baxter International Inc., for developing Ceprotin(R) for patients with life-threatening blood-clotting complications related to severe congenital protein C deficiency
  • BioMarin Pharmaceutical, Inc., for developing Kuvan(R), the first specific drug therapy for phenylketonuria (PKU)
  • Biovail Corporation, for making available to the patient community Xenazine(R), the first treatment to be approved by the Food and Drug Administration (FDA) for the jerky movements (chorea) associated with Huntington's disease
  • CSL Behring, for developing and bringing to market RiaSTAP(TM), the first and only treatment for acute bleeding episodes in patients with congenital fibrinogen deficiency, an extremely rare, potentially life-threatening bleeding disorder
  • Eisai Inc., for bringing to the patient community Banzel(TM), a much-needed treatment alternative for seizures linked to Lennox-Gastaut syndrome, a severe form of childhood epilepsy
  • GTC Biotherapeutics, Inc., for developing ATryn(R), an anticoagulant to prevent blood clots in people with a rare disease known as hereditary antithrombin (AT) deficiency
  • Regeneron Pharmaceuticals, Inc., for developing Arcalyst(R), the only approved treatment for people with a recently identified group of rare, inherited, autoinflammatory disorders known as CAPS
  • Talecris Biotherapeutics, Inc., for developing Gamunex(R), the first therapy approved for treating people with chronic inflammatory demyelinating polyneuropathy
  • ViroPharma, Inc., for making available to patients Cinryze(R), the first drug approved by FDA to prevent swelling that occurs in various body systems as a result of a disease known as hereditary angioedema (HAE)

NORD will also present its first Abbey S. Meyers Leadership Award to the Huntington's Disease Society of America. The award was established in honor of NORD's founding president, Abbey Meyers.

In addition, Patty Delaney, an FDA staff member who was a strong advocate for patients and who died last year, will be honored posthumously.


'/>"/>
SOURCE National Organization for Rare Disorders (NORD)
Copyright©2009 PR Newswire.
All rights reserved

Related medicine news :

1. TriWest Sponsors Congressional Medal of Honor Convention
2. Harvard Researchers Select S.C. BlueCross for National Honor
3. Vida Health Communications, Inc. to Be Honored as Tibbetts Award Winner
4. Live Webcast With President George H.W. Bush as Bono and DATA Are Honored With National Constitution Centers 2007 Liberty Medal in Historic Philadelphia
5. The African Medical and Research Foundation (AMREF) Honors Merck & Co., Inc. with Global Corporate Philanthropy Award
6. American Red Cross Honors Blood Collection Professionals During Blood Collectors Week 2007
7. IMA South American Extravaganza Dinner to Honor Coachella Valley Doctor
8. Forbes Honors Susan G. Komen for the Cure Founder as Trailblazer
9. Eight Michigan HMOs, Two Providers, Take Top Honors for Quality Health Care
10. MassMutual Agent Honored by Insurance Industry for Extraordinary Service to Client
11. Abbott Again Honored as Top Company for Working Moms
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/25/2016)... ... ... temporary closing of Bruton Memorial Library on June 21 due to a possible lice infestation, ... aspect of head lice: the parasite’s ability to live away from a human host, and ... necessary one in the event that lice have simply gotten out of control. , As ...
(Date:6/25/2016)... ... 25, 2016 , ... On Friday, June 10, Van Mitchell, Secretary of the ... to iHire in recognition of their exemplary accomplishments in worksite health promotion. , The ... Health & Wellness Symposium at the BWI Marriott in Linthicum Heights. iHire was one ...
(Date:6/24/2016)... CA (PRWEB) , ... June 24, 2016 , ... Marcy was in a crisis. Her ... would lash out at his family verbally and physically. , “When something upset him, he ... he would use it. He would throw rocks at my other children and say he ...
(Date:6/24/2016)... ... ... Topical BioMedics, Inc, makers of Topricin and MyPainAway Pain Relief Products, join The ‘Business for ... $12 an hour by 2020 and then adjusting it yearly to increase at the same ... wage, assure the wage floor does not erode again, and make future increases more predictable. ...
(Date:6/24/2016)... ... 2016 , ... Strategic Capital Partners, LLC (SCP) in concert ... capital for emerging technology companies. SCP has delivered investment events and professional ... than a million dollars of capital investment for five companies. The ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... SAN CLEMENTE, Calif. , June 24, 2016 /PRNewswire/ ... pulmonary function testing company, is now able to perform sophisticated lung ... ndd Medical Technologies , Inc. Patients are ... labs.  Thanks to ndd,s EasyOne PRO ® , ARL patients like ... any needed testing done in the comfort of her own home. ...
(Date:6/24/2016)... Mass. , June 24, 2016   Pulmatrix, ... pharmaceutical company developing innovative inhaled drugs, announced today that ... Russell Investments reconstituted its comprehensive set of ... "This is an important milestone for Pulmatrix," ... will increase shareholder awareness of our progress in developing ...
(Date:6/23/2016)... June 23, 2016  MedSource announced today that ... e-clinical software solution of choice.  This latest decision ... value to their clients by offering a state-of-the-art ... relationship establishes nowEDC as the EDC platform of ... full-service clients.  "nowEDC has long been a preferred ...
Breaking Medicine Technology: