or


[02/09/09 - 02:19 PM]
National Organization for Rare Disorders to Partner with Discovery Health and "Mystery Diagnosis" for Rare Disease Day 2009
Rare Disease Day is "an event designed to call attention to the public health issues associated with rare diseases affecting nearly 30 million Americans and countless others worldwide."

[via press release from Discovery Health]

National Organization for Rare Disorders to Partner with Discovery Health and "MYSTERY DIAGNOSIS" for Rare Disease Day 2009

-- NORD Names Discovery Health Media Partner and MYSTERY DIAGNOSIS Program Partner for First Rare Disease Day in U.S. on February 28, 2009 --

February 9, 2009

(Danbury, Ct.) 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 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: DISCA, DISCB, 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 www.discoverycommunications.com.





  [february 2009]  
S
M
T
W
T
F
S


· MYSTERY DIAGNOSIS (OWN)





[09/10/26 - 07:31 AM]
Video: NFL Netflix GameDay - Melbourne Kicks Off Live Tonight with Opening Teaser from Director Peter Berg
For the team. For the moment. For the love of the game.

[09/10/26 - 07:01 AM]
Video: "Below" - Official Trailer - Netflix
When a mysterious sea creature starts terrorizing a coastal town, a fisherman must fight to protect his family and his community's vanishing way of life.

[09/10/26 - 07:01 AM]
Video: "American Horror Story: 13" - Official Trailer - FX
Bringing together an all-star cast, many of whom are reprising fan favorite roles, "AHS: 13" continues to build on the anthology's decades-long legacy that has been streamed more than 700 million hours across the globe and spawned a legion of dedicated fans.

[09/10/26 - 06:31 AM]
Video: "Is It Cake? Halloween" Season 2 - Sneak Peek - Netflix
Six talented cake artists put their skills to the test as they whip up Halloween-themed cakes to trick the judges and claim the grand prize.

[09/10/26 - 06:25 AM]
The Country Music Association Announces Nominees for "The 60th Annual CMA Awards"
Ella Langley tops the list with nine nominations, while other top nominees include Miranda Lambert with seven nominations, Kacey Musgraves and Ben West with five nominations each, Cody Johnson, Chris Stapleton and Stephen Wilson Jr. with four nominations each, and Dave Clauss, Luke Combs and Lainey Wilson with three nominations each.

[09/10/26 - 06:01 AM]
National Geographic Unveils "Africa Earth's Wild Home," The First Season of a New Multiyear Natural History Franchise and One of the Most Ambitious Series About Africa Ever Produced
Presented by Rolex, the series premieres October 2 at 8:00 p.m. EDT on National Geographic and streams October 3 on Disney+ and Hulu.

[09/10/26 - 06:01 AM]
Video: "The Gift of Deceit" - Netflix Reveals the Title of Its New Brazilian Series and Teaser Featuring Marieta Severo, Alice Wegmann, and Nanda Costa
Get ready for a story filled with secrets, family intrigue, and questionable alliances, under the direction of Mauro Mendonça Filho.

[09/10/26 - 06:01 AM]
Video: "The Last First: Winter K2" - Official Trailer - Apple TV
A documentary movie exploring extreme mountaineering's changing culture during a treacherous winter K2 expedition following John Snorri Sigurjónsson and the Sadparas, directed by Amir Bar-Lev.

[09/10/26 - 05:01 AM]
Video: Netflix Unveils the Official Trailer for "A Day Like No Other," The Series About Raphael's Life
Javier Morgade and Carlos Santos portray Raphael at two stages of his life - his youth and his maturity, respectively - in a story that explores the highs and lows of the artist's life.

[09/09/26 - 11:35 PM]
Video: "Shaque: Trust No One" - Official Trailer - Netflix
Nine years after her baby is abducted, a mother's relentless search uncovers secrets around her and tests whether she can trust what she sees.

[09/09/26 - 05:01 PM]
Electrifying Korean Rom-Com Series "Take Charge of My Heart" to Spark Love on October 9
A corporate heir with an artificial heart meets a woman who's literally electric. They strike a deal that makes his heart beat - in more ways than one.

[09/09/26 - 03:52 PM]
"College GameDay" Wins Week 1 With Top-Three Regular Season Show on Record
Coverage of Clemson/LSU was the top Saturday game of Week 1.

[09/09/26 - 03:30 PM]
ESPN's US Open Coverage Is Most-Viewed Since 2022 Through Third Round
The full-tournament average so far is up 5% over 2025 and the most viewed since 2022, the year of Serena Williams' final match before her return this year.

[09/09/26 - 01:01 PM]
Star-Studded Lineup Set to Present at the 78th Emmy Awards, Sept. 14 on NBC and Peacock
They'll join host Emmy Award-winning actor, director, producer and television icon Mariska Hargitay.

[09/09/26 - 12:09 PM]
ESPN to Exclusively Televise MLB Doubleheader on September 23 Featuring Matchups with Postseason Implications
Look for Cleveland Guardians/Boston Red Sox and Houston Astros/Seattle Mariners on said date.