Rare Disease in the News

TWC News

Boy Fighting Rare Disease Promoted to Honorary Troy Police Captain
TWC News
An 11-year-old Clifton Park boy fighting a rare disease gets the job of his dreams. J.P. Honsinger was promoted to Honorary Captain of the Troy Police Department Friday. Tamara Lindstrom was at the ceremony, and has more on one family's goal to make ...
JP Honsinger becomes Troy Police Department's first honorary captainTroy Record

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Family looking for answers after rare disease strikes two daughters
Columbus Telegram
After numerous tests, doctors from Children's Hospital & Medical Center in Omaha confirmed 5-week-old Joselyn had what they called a very rare and fatal disorder, caused by pockets of fluid and cysts that grow throughout the brain. The brain eventually ...


California Boy Raises $800000 to Fight Friend's Rare Disease
NBCNews.com
Lora Pournazarian rarely sleeps through the night. A bundle of nerves, Lora is up every few hours β€” eyes fixed on the alarm clock, thoughts focused on her 8-year-old son, Jonah. Ten times a day, Lora and her husband, Rabin, feed Jonah a mix of corn ...

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MyCentralJersey.com

Outpouring of support helps Epps wrestle rare disease
MyCentralJersey.com
In the week that has passed since Brett Epps launched a Facebook page detailing his need for a living kidney donor after being stricken with a rare disease, the former Rutgers Prep wrestling star and Perth Amboy native has received a lifetime of support.

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Dallas Morning News

Mikayla Bass, former Coppell volleyball star afflicted with rare disease ...
Dallas Morning News
For Mikayla Bass, Oct. 17 was one of her good days as she battles a rare disease that has no known cure and has robbed her of much more than a college volleyball career. The former two-sport state champion from Coppell High School could get out of bed.

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Community rallies around boy with rare disease
Lincoln Journal Star
Jaxon has Christianson syndrome, a rare disorder that affects the nervous system. In the last few months, Jaxon's disease has worsened. He can no longer walk or feed himself. Last month, the 7-year-old spent eight days at Children's Hospital in Omaha.


Second-grader leads Wahoo Warriors onto field for senior night
KETV Omaha
Jaxon is wheelchair bound, and suffers from a rare degenerative disease called Christianson Syndrome. β€œIt's definitely scary, not knowing what to expect, but we just have to take it day by day,” said Jayne Kreifel, Jaxson's mother. Warrior team members ...

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FDA.gov (blog)

The more we know about rare diseases, the more likely we are to find safe and ...
FDA.gov (blog)
Janet Woodcock You may be inclined to think that rare diseases affect only a tiny fraction of the more than 320 million people in our country. That's true about a single rare disease. But there are about 7,000 rare diseases. If you add them all ...


WLWT Cincinnati

Rare disease detected in Ohio deer
Toledo Blade
COLUMBUS β€” After a rare disease made its way into the Ohio captive deer population, state officials warned hunters about eating deer or elk meat. Chronic Wasting Disease was recently identified in a deer at World Class Whitetails hunting facility in ...
Ohio warns hunters about rare deer diseaseWLWT Cincinnati
First deer with Chronic Wasting Disease diagnosed in OhioColumbus Dispatch

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BioPontis, Reborn as Nonprofit, Takes On Rare Disease Drugs
Xconomy
Of the more than 7,000 rare diseases that each affect just a sliver of the population, an estimated 95 percent of them have no treatment. The lack of treatments is an economic problem, not a scientific one, says Barbara Handelin, CEO of the BioPontis ...
The Hereditary Neuropathy Foundation and BioPontis Alliance for Rare Disease ...PR Newswire (press release)

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