Latest News

Wednesday, July 29, 2015

News3LV

Nevada woman's rare disease causes thousands of painful lumps
News3LV
"Pain so deep that it hurts to your skeletal bones,” says Momi who has undergone a mastectomy and hysterectomy as a result of the disease. "So far I have had four tumors removed-- two from each breast, I had one removed from my shoulder, I have had one ...

Wednesday, July 29, 2015

News3LV

Nevada woman's rare disease causes thousands of painful lumps
News3LV
"Pain so deep that it hurts to your skeletal bones,” says Momi who has undergone a mastectomy and hysterectomy as a result of the disease. "So far I have had four tumors removed-- two from each breast, I had one removed from my shoulder, I have had one ...

and more »
Wednesday, July 29, 2015

Chicago Tribune

Mokena infant with rare disease needs new liver
Chicago Tribune
Dr. Seed Mohammad, an assistant professor of pediatrics at Northwestern University and an attending physician at Lurie Children's Hospital, said, "Nathan has an extremely rare liver disease that is progressing rapidly. "We have our suspicions as to ...

Tuesday, July 28, 2015

Labiotech.eu (blog)

Struggling AstraZeneca sells Rare Disease drug to Genzyme-Sanofi for €300M
Labiotech.eu (blog)
The Pharma giant AstraZeneca is still struggling even if in better shape. It just sold one of his rare disease drug already on the market to THE rare disease Biotech Genzyme, now part of Sanofi. AstraZeneca is under pressure. Last April 2015, the ...
Genzyme Strengthens Endocrinology Portfolio with Acquisition of Rare Disease ...MarketWatch
Sanofi SA: Sanofi: Genzyme Strengthens Endocrinology Portfolio with ...The Wall Street Transcript
GENZYME STRENGTHENS ENDOCRINOLOGY PORTFOLIO WITH ACQUISITION OF RARE DISEASE ...The FINANCIAL

all 93 news articles »
Monday, July 27, 2015

WRIC

9-year-old raises $47K for friend with rare disease
19 Action News
BENTON, AR (KATV/CNN) - A 9-year-old girl was hoping to raise a little money making bracelets to help her best friend with a rare skin disease, but that little turned into thousands. For girls Bethany Walker's age making these bracelets is a pretty ...
Girl raises $47000 with bracelets to help best friend with rare skin diseaseWRIC
Child's Efforts to Help Friend with Rare Skin Disease Pays OffWKEF ABC 22
Arkansas girl raises over $47K to help friend with rare skin diseaseWWMT-TV

all 12 news articles »
Monday, July 27, 2015

WHAG

Local woman struggles with rare disease, seeking stem cell treatment
WHAG
HAGERSTOWN, Md. – A local woman fighting a rare disease is currently seeking treatment to improve her quality of life. As her battle continues, she said complications with funding are holding her back. "I can't be the mother, I can't be the grandmother ...

Monday, July 27, 2015

WRIC

9-year-old raises $47K for friend with rare disease
KPLC-TV
BENTON, AR (KATV/CNN) - A 9-year-old girl was hoping to raise a little money making bracelets to help her best friend with a rare skin disease, but that little turned into thousands. For girls Bethany Walker's age making these bracelets is a pretty ...
Child's Efforts to Help Friend with Rare Skin Disease Pays OffWKEF ABC 22
Girl raises $47000 with bracelets to help best friend with rare skin diseaseWRIC
Arkansas girl raises over $47K to help friend with rare skin diseaseWWMT-TV

all 12 news articles »
Monday, July 27, 2015

Sun Sentinel

Y-100 radio host Froggy spreads awareness of his rare disease
Sun Sentinel
Langley works with Straight Talk Acromegaly, an awareness initiative, to share his personal experiences through educational videos and to offer hope and encouragement to others living with the disease. "I think people are much more aware of the ...

and more »
Monday, July 27, 2015

Forbes

When Her Daughter Was Diagnosed With A Rare Disease, This Accountant Started A ...
Forbes
Karen Aiach, 43, is the founder and CEO of Lysogene, a biotech company developing gene therapy treatments for rare central nervous system diseases. Remarkably, the French native had no background in science or the pharmaceutical industry, let alone ...

and more »
Monday, July 27, 2015

Yorkshire Evening Post

Leeds dad Duncan is en route to Arctic Circle to raise funds after rare ...
Yorkshire Evening Post
Duncan, who is 40, said: “They are the reason I'm doing it but it's also the reason people should support us because this disease affects more than just Ellie Mae and Caleb and with no cure and little research there is also very little hope for these ...