Latest News

Sunday, April 20, 2014

Kick-starting resources to research, cure rare diseases
STLtoday.com
Dr. Jimmy Lin, founder of St. Louis-based Rare Genomics Institute, wants to empower those patients with rare diseases who so often get lost in the crowd. Lin started Rare Genomics three years ago as a way to connect those suffering from rare or ...

Saturday, April 19, 2014

Social Media, Viral Videos Help Researchers Find Patients With Rare Diseases ...
Medical Daily
Scientists studying orphan diseases have found that the Internet can help put them in touch with patients suffering from rare disorders. Viral videos and campaigns are helping unite people who share the same unique disease, while also making it easier ...

Saturday, April 19, 2014

Woman's quest could help cure rare disorder
10TV
ST. LOUIS (AP) — When Mary Kaye Richter's son was diagnosed, she could only find a few paragraphs about hypohidrotic ectodermal dysplasia, which inhibits the growth of teeth, hair and sweat glands. To learn more, she converted a storage room of a ...

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Friday, April 18, 2014

Woman's quest could help cure rare disorder
10TV
ST. LOUIS (AP) — When Mary Kaye Richter's son was diagnosed, she could only find a few paragraphs about hypohidrotic ectodermal dysplasia, which inhibits the growth of teeth, hair and sweat glands. To learn more, she converted a storage room of a ...

Friday, April 18, 2014

CBS Local

Young boy with rare disease gets to fly like Iron Man
wtvr.com
An 8-year-old boy with a rare disease was given the chance to fly like his hero Iron Man in Colorado earlier this week. ironmankid. Max Vertin, via KCNC. Max Vertin suffers from Duchenne muscular dystrophy, which slowly robs his muscles of their abilities.
8-Year-Old With Rare Disease Becomes 'Iron Man' For A DayCBS Local
Young boy with rare disease gets wish to fly like Iron Manwtkr.com
Eight-year-old boy with rare degenerative disease fulfils wish to fly like ...Metro
WNCT -The Republic -Charlotte Observer
all 81 news articles »
Thursday, April 17, 2014

Metro

Eight-year-old boy with rare degenerative disease fulfils wish to fly like ...
Metro
An eight-year-old boy with a rare degenerative disease had his dream come true when he was taught to fly like his favourite superhero. Max Vertin suffers from Duchenne Muscular Dystrophy (DMD), a condition which is slowly eating away at his muscles and ...
8-Year-Old With Rare Disease Becomes 'Iron Man' For A DayCBS Local
8-yr.-old boy with rare disease lives out his dream of flyingWNCT
Nebraska 7-year-old with rare muscle disease gets his wish: skydiving in ColoradoThe Republic
Daily Mail -Danbury News Times
all 72 news articles »
Thursday, April 17, 2014

Patients with rare lung disease face agonizing treatment dilemma
Medical Xpress
Symptoms include shortness of breath, chest pain, chronic cough and pneumothoraces (lung collapses). As the disease progresses, many patients will need to go on oxygen, and some will require lung transplants. LAM is uncommon, but not as rare as once ...
Docs who treat patients with severe LAM face agonizing treatment decisionNews-Medical.net

all 5 news articles »
Thursday, April 17, 2014

David, Goliath Team Up in Battle to Cure Rare Diseases
Fox Business
When Kathy Giusti was diagnosed with a rare and fatal blood cancer nearly 20 years ago, there wasn't a single drug in the pipeline to help her fight her grim prognosis, and she was expected to die within three years. That is until the then-new mother ...

Thursday, April 17, 2014

Patients with rare lung disease face agonizing treatment dilemma
EurekAlert (press release)
MAYWOOD, Il. (April 17, 2014) – Doctors who treat patients with a severe and progressive respiratory disease called lymphangioleiomyomatosis (LAM) can face an agonizing treatment decision. The drug sirolimus can slow progression of the disease and ...

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Wednesday, April 16, 2014

Winnipeggers help support families facing rare disease
Globalnews.ca
Batten disease is a rare inherited disorder of the nervous system that develops when a child has two defective genes. There is no cure and it is always fatal. It is unusual for children with Batten disease to live beyond their teens. The disease only ...