Latest News

Tuesday, August 22, 2017

Did This Rare Disease Blacken the Gums of the Franklin Expedition—And Ultimately Kill Them?
Smithsonian
This description of the mouths of the Franklin Expedition crew has often been attributed to lead or poisoning or scurvy, a disease stemming from Vitamin C deficiency that causes fatigue, swollen gums and joint pain, and was often experienced by sailors ...

Tuesday, August 22, 2017

New test for rare immunodeficiency
Science Daily
Rare diseases are often only diagnosed very late, especially since in many cases, diagnostic tests are not available or are only available in a few laboratories. Hepatic Veno-occlusive disease with immunodeficiency is a clear example of this. It is an ...

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Tuesday, August 22, 2017

STAT

With its silence on key questions, Omeros raises doubts about its drug
STAT
he Seattle biotech Omeros (OMER 1) has long told investors it has a potential blockbuster on its hands in OMS721, an experimental drug aimed at treating ...

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Monday, August 21, 2017

Rare Disease Report

What Rare Diseases Teach Us: Gage's Story
Rare Disease Report
More than 360,000 babies are born each day world-wide, which, in general, is not such a rare event. However, when a baby is diagnosed with a rare disease after he or she is born, that becomes a rare event which in turn becomes a rare journey for the ...

Monday, August 21, 2017

Asahi Shimbun

iPS technology leads to clinical trial on rare disease patients
Asahi Shimbun
A Japanese team will conduct the world's first clinical trial for a potential cure that was identified based on iPS cell technology for a rare and intractable genetic disease. The team of researchers from Kyoto University's Center for iPS Cell Research ...

Monday, August 21, 2017

Rare disease Moyamoya claims life of 4 year old in Darrang
The Sentinel
A very senior pediatric surgeon of Guwahati informed The Sentinel that Moyamoya disease is a rare disorder of progressive cerebrovascular caused by blocked arteries at the base of the brain in an area called the 'basal ganglia'. In Japanese language ...

Monday, August 21, 2017

Personal Tragedy Gives Rare Disease Patient New Resolve
Newswise (press release)
Newswise — Dan Seftick thought his biggest challenge in life was his rare disease, dermatomyositis. When his son Greg tragically died in an avalanche while hiking in Grand Tetons National Park, he discovered there can be much bigger mountains to climb.

Monday, August 21, 2017

Personal Tragedy Gives Rare Disease Patient New Resolve
Newswise (press release)
Newswise — Dan Seftick thought his biggest challenge in life was his rare disease, dermatomyositis. When his son Greg tragically died in an avalanche while hiking in Grand Tetons National Park, he discovered there can be much bigger mountains to climb.

Monday, August 21, 2017

TopYaps

This Guy Suffers From A Rare Disease That Has Caused His ...
TopYaps
This Aspiring Footballer Suffers From A Life-Threatening Disease, Still Dreams Of Playing For India.

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Monday, August 21, 2017

Ten Eyewitness News

Sydneysider contracts rare disease at party - TenPlay
Ten Eyewitness News
An Australian man contracted a rare, potentially deadly, disease in Thailand after he trod on broken glass while at a Full Moon party with friends.

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