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Erdheim-Chester disease - Google News
Terminally ill Va. teen becomes pilot for a day - W*USA 9

W*USA 9

Terminally ill Va. teen becomes pilot for a day
W*USA 9
The 16-year-old Frederick resident is battling a disease so rare only 30 other teens in this country have it. It's called Erdheim-Chester Disease and the former cross country runner and A student has battled a brain tumor among other hurdles in the ...
Stafford student has high-flying day at base


Friday, February 05, 2016 5:58:35 PM

Stafford teen to be pilot for a day - Inside NoVA

Inside NoVA

Stafford teen to be pilot for a day
Inside NoVA
Michael is one of some 30 teens in the U.S. with Erdheim-Chester Disease, a rare illness with similarities to cancer and auto-immune diseases. Prior to the onset of the disease, Michael was a straight-A student and cross-country runner. In recent ...


Thursday, February 04, 2016 4:12:02 PM

The ultra-rare Erdheim-Chester disease: Turning grief into a campaign for a cure - Washington Post

Washington Post

The ultra-rare Erdheim-Chester disease: Turning grief into a campaign for a cure
Washington Post
The cause was Erdheim-Chester disease (ECD), one of 7,000 diseases tracked by the nonprofit National Organization for Rare Disorders. The National Institutes of Health and the Food and Drug Administration call such ailments “orphan” diseases because ...


Monday, November 17, 2014 4:47:28 PM

Rare disease marks first awareness week Sept. 14-18 - Prescott Daily Courier

Prescott Daily Courier

Rare disease marks first awareness week Sept. 14-18
Prescott Daily Courier
PRESCOTT VALLEY - Leslie Adler is one of three living Arizona patients with a rare disease of unknown cause called Erdheim-Chester Disease (ECD). To date, she is one of 144 people diagnosed in the United States, and one of only 241 in the world.


Thursday, September 17, 2015 9:06:18 AM

Staying Positive, Looking Forward in the Face of One of the World's Rarest Diseases - TWC News

TWC News

Staying Positive, Looking Forward in the Face of One of the World's Rarest Diseases
TWC News
VICTOR, N.Y. – Three years ago Victor resident Gurnal Jones was diagnosed with the Erdheim-Chester Disease, a very rare sickness that causes an overproduction of a type of white blood cells that can damage all of a person's organs. Gurnal's wife, Julie ...


Saturday, September 19, 2015 5:32:33 PM

Remarkable breakthroughs for ultra-rare disease thanks to DeRidder group - KPLC-TV

Remarkable breakthroughs for ultra-rare disease thanks to DeRidder group
KPLC-TV
Every day in the DeRidder office for Kathy Brewer and Jessica Corkran with the Erdheim-Chester Disease Global Alliance is full of brainstorming sessions, note taking, doctor calls, and international e-mails with people around the world affected by this ...


Thursday, August 06, 2015 1:49:23 PM

Mason City will serve as hub for worldwide rare disease fundraiser - Mason City Globe Gazette

Mason City Globe Gazette

Mason City will serve as hub for worldwide rare disease fundraiser
Mason City Globe Gazette
Bob Rodgers and his wife, Phyllis, are hosting the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise funds and awareness of the rare disease. Bob was diagnosed with the rare Erdheim-Chester Disease following a knee injury. Bob Rodgers.


Thursday, September 03, 2015 3:35:25 PM

The Exceptional: What Miraculous Recoveries Can Teach Us About Beating Cancer - Popular Mechanics

Popular Mechanics

The Exceptional: What Miraculous Recoveries Can Teach Us About Beating Cancer
Popular Mechanics
After fifteen years of suffering from intractable bone pain, Porterfield was diagnosed with a rare disease called Erdheim-Chester, for which there are no FDA-approved treatments. By 2013 she was so ill that she couldn't walk. Her doctor gave her only a ...


Friday, October 16, 2015 12:25:24 PM

New Kind of Cancer Study Finds New Targets for Tailored Treatments - NBCNews.com

NBCNews.com

New Kind of Cancer Study Finds New Targets for Tailored Treatments
NBCNews.com
It's called Erdheim-Chester disease, a very rare disorder in which the immune system produces excess quantities of cells called histiocytes. These cells damage the brain, kidneys and other organs. Half of Erdheim-Chester patients have the BRAF mutation.
Memorial Sloan Kettering Cancer Center Researchers Publish Landmark “Basket Study”
BRAF May Be a Good 'Target' in Nonmelanoma Cancers
First trial targeting mutation, not cancer type, gives mixed results
 -

Wednesday, August 19, 2015 5:23:16 PM

Fundraiser for Gurnal Jones Saturday - Rochester Democrat and Chronicle

Rochester Democrat and Chronicle

Fundraiser for Gurnal Jones Saturday
Rochester Democrat and Chronicle
A fundraiser will be held from 3-7 p.m. Saturday in honor of former Irondequoit and St. John Fisher College basketball standout Gurnal Jones, who is battling a rare disease called Erdheim-Chester. The event, “Gurn's Courage Quest,” will benefit the E-C ...


Thursday, September 17, 2015 6:50:47 PM

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