National Organization for Rare Disorders To Partner With Discovery Health and 'MYSTERY DIAGNOSIS' for Rare Disease Day 2009
February 09 2009 - 7:00AM
PR Newswire (US)
- NORD Names Discovery Health Media Partner and MYSTERY DIAGNOSIS
Program Partner for First Rare Disease Day in U.S. on February 28,
2009 - DANBURY, Conn., Feb. 9 /PRNewswire/ -- The National
Organization for Rare Disorders (NORD) announced that Discovery
Health and its popular series, MYSTERY DIAGNOSIS, will serve as
media and program partners for Rare Disease Day on February 28,
2009. This year represents the first U.S. observance of Rare
Disease Day, an event designed to call attention to the public
health issues associated with rare diseases affecting nearly 30
million Americans and countless others worldwide. NORD and its 145
partner organizations serve as advocates for these patients by
helping heighten awareness of their conditions and the need for
increased research funding for effective treatments. Information on
Rare Disease Day will also be featured on Discovery Health and
online on DiscoveryHealth.com. Discovery Health's award-winning
MYSTERY DIAGNOSIS chronicles the experiences of patients who suffer
from conditions outside of the medical mainstream. Often the
diseases profiled on MYSTERY DIAGNOSIS are the rare or "orphan"
conditions represented by NORD. Each episode features patients who
are initially misdiagnosed or undiagnosed altogether due to the
uncommon nature of their symptoms and general lack of awareness
regarding their conditions. Ashley Kurpiel of Atlanta has been
selected to serve as a patient spokesperson for Rare Disease Day.
Featured on the episode of MYSTERY DIAGNOSIS premiering March 2 at
10PM ET/PT, Ashley had her arm erroneously amputated due to a
doctor's misdiagnosis of her rare disease during her childhood. At
the age of 3, Ashley was finally diagnosed with Fibrodysplasia
Ossificans Progressiva (FOP,) one of the most disabling conditions
known to medicine --- and through NORD, Ashley's family connected
with one of the world's leading experts on FOP who has helped the
family understand and cope with her condition. Although she was not
expected to live past age 10, Ashley is currently 26 years old and
leads a very active life despite the crippling disease. "Far too
often, individuals with rare diseases are left to fight for
themselves while suffering through multiple misdiagnoses or a lack
of effective treatments," stated Carole Tomko, President and
General Manager of Discovery Health. "Discovery Health is proud to
join NORD in its efforts to generate awareness of these orphan
conditions and raise the quality of life for the patients affected
by them." This year represents the second Rare Disease Day
worldwide, with the U.S., Canada, Australia, and China joining the
nations of the European Union in observing the event in 2009.
Overall, approximately 180 patient organizations, medical
societies, companies developing orphan products, and others, have
joined NORD as Rare Disease Day partners. For more information,
visit NORD's Web site at rarediseases.org. ABOUT NORD: Established
in 1983, NORD is a nonprofit organization which represents the
interests of all patients and families whose lives have been
impacted by rare diseases. A rare disease is defined as one that
affects fewer than 200,000 people in the United States. According
to the National Institutes of Health (NIH), there are nearly 7,000
such diseases, affecting nearly 30 million Americans. NORD provides
research grants and fellowships, educational services for patients,
the public and medical professionals, and patient assistance
programs. NORD provides advocacy in Washington DC on behalf of the
rare disease community. ABOUT MYSTERY DIAGNOSIS: MYSTERY DIAGNOSIS
is produced for Discovery Health by True Entertainment. For
Discovery Health, Alon Orstein is executive producer and for True
Entertainment, Steven Weinstock, Glenda Hersh and Stephanya J.
Miller are executive producers. About Discovery Health: Discovery
Health Media includes the Discovery Health and FitTV television
networks and online assets including
http://www.discoveryhealth.com/, as well as its Continuing Medical
Education (CME) business and Discovery's first stand-alone VOD
service, Discovery Health On-Call. Discovery Health Media is part
of Discovery Communications (NASDAQ:DISADNASDAQ:DISBDNASDAQ:DISCK),
the world's number one nonfiction media company reaching more than
1.5 billion cumulative subscribers in over 170 countries. Discovery
empowers people to explore their world and satisfy their curiosity
through 100-plus worldwide networks, led by Discovery Channel, TLC,
Animal Planet, Science Channel, Planet Green, Investigation
Discovery and HD Theater, as well as leading consumer and
educational products and services, and a diversified portfolio of
digital media services including HowStuffWorks.com. For more
information, please visit http://www.discoverycommunications.com/.
DATASOURCE: Discovery Health CONTACT: For Discovery Health: Katie
Crockett, +1-240-662-2707, , or Robyn Schechter, +1-240-662-6082, ;
or For NORD: Mary Dunkle, +1-203-744-0100, Web Site:
http://www.discoveryhealth.com/
Copyright
Discovery Communications, - Series B Common Stock (MM) (NASDAQ:DISBD)
Historical Stock Chart
From Oct 2024 to Nov 2024
Discovery Communications, - Series B Common Stock (MM) (NASDAQ:DISBD)
Historical Stock Chart
From Nov 2023 to Nov 2024