Rare Disease in the News

KABC-TV

SoCal teen with rare disease serves as inspiration to pro athletes
KABC-TV
SoCal teen with rare disease serves as inspiration to pro athletes. You need Flash to watch this video.Sorry, your browser doesn't support Flash, needs a Flash update, or has Flash disabled. SoCal teen with rare disease serves as inspiration to pro ...


Charlotte Observer

State law honors Charlotte girl with rare disease
Charlotte Observer
Following a unanimous vote by the N.C. legislature, Gov. Pat McCrory has signed Taylor's Law, renaming the 2015 legislation that created the N.C. Advisory Council on Rare Diseases. The new name honors Taylor King, 17, of Charlotte who suffers from ...


The Times and Democrat

Ehrhardt hunter battling rare disease believed to be linked to exposure to wild hog
The Times and Democrat
Because Smith has butchered as estimated 200 feral hogs in addition to other types of wild game as a hunting guide, he says he will never know for sure if the disease came from a wild hog. However, he said he remembers cutting his hand while butchering ...

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KaloBios emerges from bankruptcy, with rights to a new rare disease treatment
MarketWatch
KaloBios said it acquired the rights to develop benznidazole for the treatment of Chagas disease from Savant Neglected Diseases LLC for an upfront payment of $3 million, and warrants for Savant to buy 200,000 KaloBios common shares. "The Company has ...


WNYT

Group united by rare disease meets in Saratoga Springs
WNYT
SARATOGA SPRINGS - Living with a rare disease can be frightening, isolating and infuriating, because so few research dollars are spent to find a cure. A brother and sister from Colonie know this all too well. They're among 200 people, worldwide, ever ...
Capital Region doctor's experience with rare Degos disease prompts conferenceAlbany Times Union

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Findacure workshop: “How rare disease patient groups can work with researchers”
ScienceBlog.com (blog)
Although collectively, rare diseases affect an estimated 6 to 8 per cent of the EU population (EURORDIS), the low prevalence of individual rare diseases means they have historically received little attention from government or industry research funders ...


Detroit Lakes Online

Detroit Lakes man brings awareness to rare disease, AMC
Detroit Lakes Online
AMC is congenital, and it is rare. Affecting one out of every 3,000 births, its causes are largely unknown, but an inadequate amount of space for the baby to grow in vitro is the suspected culprit for some types. It is also what Heimark suspects to ...


Prognosis for rare disease depends on its extent
STLtoday.com
Dear Dr. Roach • I have a friend who is the primary caregiver to her son, diagnosed with Langerhans cell histiocytosis. I would like to better understand this. Can you help? — O.C.. Answer • Langerhans cell histiocytosis is a rare disease that is ...

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Sonoma Index-Tribune

Nina Gorbach steps out of the rare-disease shadows
Sonoma Index-Tribune
Italian Street Painting Marin, an annual festival featuring over 100 master chalk artists, who will transform the streets and sidewalks of San Rafael into a massive art gallery, with all proceeds benefitting the EveryLife Foundation for Rare Diseases ...


WWMT-TV

Girl with rare disease is an inspiration world-wide, WMU athlete included
WWMT-TV
Just to kind of inspire me to go out and do my best every single game cause she gets up every day in the morning and has this disease, DBA, and it doesn't affect her at all. Her spirit is unbelievable," said Goff. And in a special video, Audrey told us ...