Rare Disease in the News


Experts call for policies on rare diseases
A rare disease, also known as an orphan disease, is any disease that affects between 0.65 and 1 percent of the population. About 80 percent of rare diseases are genetic, and many appear early in life. "Despite the huge number of cases, the related work ...


Boy, 4, suffers rare disease that could cause him to become scared stiff
Fox News
Patients diagnosed with hyperekplexia are found to have extreme muscle tension and an exaggerated startle reaction to unexpected stimuli, like loud noises, according to the National Organization for Rare Diseases (NORD). During a reaction, muscle ...
Young boy can be scared stiff by a bath due to rare 'startle disease ...Daily Mail
Youngster Jacob Madgin could be literally scared stiff by rare conditionChronicleLive

all 8 news articles »

Birmingham Mail

Rare disorder meant girl was always hungry
ITV News
As a schoolgirl Aneeba Ahmed from Erdington in Birmingham hid in the kitchen and would gulp down whole bottles of tomato sauce, eat blocks of butter and shovel salt in her mouth. It was the only thing that would keep hunger pangs at bay because of a ...
I ballooned to 16 stone eating blocks of butter and bottles of tomato ketchupMirror.co.uk
The Birmingham schoolgirl who gulped down BOTTLES of tomato sauce ...Birmingham Mail

all 3 news articles »

South Asian Link

Case Of Punjab Child With Rare Disease Reaches PMO
South Asian Link
JALANDHAR – The case of seven-month-old Samridhi Verma, who is suffering from extra hepatic biliary artesia (EBA)—one of the rarest child diseases in the world—has reached the Prime Minister's Office (PMO). Taking cognisance of The Tribune report ...

Rare disease biotech Xenon Pharmaceuticals files for a $52 million IPO
Xenon Pharmaceuticals, an early-stage biotech with a gene therapy discovery platform for rare diseases, filed on Wednesday with the SEC to raise up to $52 million in an initial public offering. Xenon has a number of collaboration and licensing ...

Mountain View family fights rare disease that struck son
Uinta County Herald
EVANSTON — By all accounts, Kyle Green of Mountain View was a normal toddler, developing into a rambunctious boy. But everything changed for Kyle and his family in June 2013. On the way home from a family camping trip, his mom Kindra said she ...

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Douglas County deer dying from rare disease
ROSEBURG, Ore. -- Deer in the Roseburg area are dying from a disease spread through gnat bites, according to the Oregon Department of Fish and Wildlife. Tests confirm more than 100 deer have died from epizootic hemorrhagic disease, also known as ...
Vets warn that rare virus killing deer can harm livestockCapital Press

all 19 news articles »

OUR GOOD DEEDS: Walk raises awareness of rare disease
Rapid City Journal
The disease is rare, only about 20 in 100,000 people have MG. In children, it's extremely rare and incredibly severe. That's why Hattie's mother, Kelli Ewert is the driving force behind the upcoming 2014 South Dakota MG Walk to raise awareness about ...

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The Guardian

Trends in Rare Diseases – or why the ice bucket challenge is a cold dash of ...
The Guardian
To be fair, there are some rare diseases mentioned in some of the existing journals. Trends in Parasitology covers diseases that are not rare at all, but are still not trendy – anyone you know affected by schistosomiasis? Nonetheless, literature on ...

Orem teen passes away after battle with rare disease
Daily Herald
Victoria (Tori), Madelena (Maddie) and Malachi (Ike) fought through intense chemotherapy, followed by bone marrow transplants, in order to stop the disease that was slowly breaking down the nerves inside their brains. While Maddie, now 15, and Ike, now ...

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