Mary Dunkle

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  www.stephanie-hunt.com/nord.htm - [Cached Version]
  Published on: 9/21/2008    Last Visited: 9/21/2008  

  Mary Dunkle is the dedicated Vice President for Communications of the National Organization for Rare Disorders (NORD), with responsibility for NORD's Web site, publications, information center, and research program.She has been with NORD for almost nine years, and previously was a journalist and medical writer.She recently answered these questions for me.
  
  Stephanie: What drew you to NORD?
  
  Mary: I had been doing freelance medical writing and had an opportunity to meet NORD's president, Abbey Meyers.
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  Mary: NORD's greatest single accomplishment has been the role its founders played in getting the law known as the Orphan Drug Act passed by Congress and signed into law by President Reagan in 1983.
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  Mary: There have been so many inspirational moments that it's really difficult to pick out just one.
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  Mary: In some ways, NORD won't change at all in the future.
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  Mary: The physicians who become interested in rare diseases and devote their careers to treating patients and/or doing research on these diseases are fascinating to me.Every one of them could make more money working with more mainstream diseases.NORD has a Medical Advisory Committee of 15 physicians, mostly at campuses around the country, who are experts on various types of rare diseases.These men and women are fascinating, and I love to hear them talk about their work.Each year at our annual banquet, we honor rare-disease researchers, and they are always very special people who are passionate about what they do.
  
  Mary can be reached at:
  
  Mary DunkleVice President of CommunicationsNational Organization for Rare Disorders55 Kenosia AvenuePO Box 1968Danbury, CT 06813-1968Phone: 203.744.0100Fax: 203.798.2291

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  www.berkshireeagle.com/northeastnews/ci_9620154 - [Cached Version]
  Published on: 6/18/2008    Last Visited: 6/19/2008  

  Mary Dunkle, vice president for communications at the National Organization of Rare Diseases, spoke about the mother of a 2-year-old who recently contacted the agency seeking help.The child, diagnosed with a rare disease that affects the white blood cells, was prescribed a treatment that costs $3,000 a month.
  
  The mother's insurance won't cover the cost because the drug is "off-label," or outside the scope of the drug's approved use, she said.
  
  "This is becoming a serious problem," Dunkle told the committee.
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  Besides helping families with insurance coverage, Dunkle said the legislature can enact bills that protect people from genetic discrimination, provide services to families with older, disabled children, cover gaps in reimbursements for medically necessary foods, and make sure there is adequate screenings of newborns for certain diseases, as well any help the families might need after a diagnosis is determined.

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  www.tennessean.com/apps/pbcs.dll/article?AID=/20070714/ - [Cached Version]
  Published on: 7/14/2007    Last Visited: 7/15/2007  

  Getting treatment for rare diseases is a widespread problem, said Mary Dunkle, spokeswoman for the National Organization for Rare Disorders.The organization estimates that there are 6,000 to 7,000 rare diseases affecting more than 25 million Americans.
  
  "There simply aren't treatments for many of these diseases," Dunkle said.

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  rarediseases.checkbiotech.org/news/2008-06-19/Task_Forc - [Cached Version]
  Published on: 6/19/2008    Last Visited: 6/28/2008  

  Mary Dunkle, vice president for communications at the National Organization of Rare Diseases, said the legislature can enact bills that provide services to families with older, disabled children, cover gaps in reimbursements for medically necessary foods, and make sure there is adequate screenings of newborns for certain diseases.

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  www.floridatoday.com/apps/pbcs.dll/article?AID=/2008070 - [Cached Version]
  Published on: 7/1/2008    Last Visited: 7/1/2008  

  Mary Dunkle, vice president of communications for the National Organization for Rare Diseases, also stressed the importance of family support groups to the research process and to keeping affected family members abreast of the latest developments.
  
  "With rare diseases, we always refer them to a parent organization for their disease," she said."It keeps the family in the loop and lets them know about clinical (research) trials or other research that might help."
  
  Many parents with little or no background, she said, "get involved out of necessity."

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  www.floridatoday.com/apps/pbcs.dll/article?AID=/2008070 - [Cached Version]
  Published on: 7/1/2008    Last Visited: 7/1/2008  

  Twenty five years later, Mary Dunkle, vice president of communications of NORD, described the act, as "very successful, in our view."
  
  A decade before the law's enactment, she said, there were only 10 drugs brought to market for rare diseases.Since then, 1,170 drugs have entered the research pipeline, and more than 300 have gained marketing approval from the Food and Drug Administration.
  
  "Many of these drugs are for diseases without any other treatments," giving patients and families new hope, Dunkle said.
  
  The act grants drug companies an automatic patent, which Dunkle said is the most successful draw for drug development.Manufacturers get seven years of market exclusivity after product approval.
  
  And while devices are not eligible for a similar "orphan designation," she said, a provision in the Safe Medical Devices Act of 1990 makes it easier and less costly for manufactures to bring products to market for the rare-disease population.

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  www.postandcourier.com/news/2008/feb/11/shining_light_o - [Cached Version]
  Published on: 2/11/2008    Last Visited: 2/11/2008  

  Finding a celebrity has become an especially popular route for maladies without ribbons or marathons, said Mary Dunkle of the National Organization for Rare Disorders. (The government defines "rare" as afflicting fewer than 200,000 Americans.)
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  Still, a household name is no guarantee, Dunkle said.

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  www.chicagotribune.com/news/local/chi-idol_28jan28,0,77 - [Cached Version]
  Published on: 1/28/2008    Last Visited: 1/28/2008  

  Finding a celebrity has become a popular route for maladies without ribbons or marathons, said Mary Dunkle of the National Organization for Rare Disorders. (The government defines "rare" as afflicting fewer than 200,000 Americans.)

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  apsfa.easyjournal.com/ - [Cached Version]
  Published on: 1/3/2008    Last Visited: 4/26/2008  

  Mary Dunkle, National Organization for Rare Disorders, (203) 744-0100, mdunkle@rarediseases.org

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  www.rarediseases.org/news/newsletters/enews_aug05.htm - [Cached Version]
  Published on: 8/18/2005    Last Visited: 12/7/2007  

  Mary DunkleVice President, CommunicationsNational Organization for Rare Disorders (NORD)

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