Rare Disease in the News
Lawrenceville woman with rare disease makes strides with charity
Beth Nguyen, right, poses for a photo with Lawrenceville Mayor Judy Jordan Johnson after the mayor issued a proclamation on syringomyelia. Nguyen, a former nurse, has the rare disease and last year started a nonprofit to raise awareness. (Special Photo).
How a system meant to develop drugs for rare diseases broke down
There isn't much profit in drugs or vaccines targeting rare diseases, especially when those rare diseases afflict people who don't have a lot of money. Since 2007, the US government has attempted to draw companies into this sparsely occupied space by ...
Brockville Recorder and Times
'Rare disease' views need change
Brockville Recorder and Times
“They've known what's been going on since 2012,” said the 29-year-old from Kingston on Tuesday, referring to local MPP Steve Clark's outspoken criticism of the Liberal government's health ministry and how it treats rare disease sufferers. “This isn't ...
Collaboration Aims to Identify Rare Diseases
IBM and Boston Children's Hospital announced that they intend to collaborate to apply IBM's Watson cognitive platform to help clinicians identify possible options for the diagnosis and treatment of rare pediatric diseases. The news was unveiled at the ...
$7K donated to help Bullskin Township boys with rare disease
There was a celebration in the gymnasium when the second annual Connellsville Area School District Mustache Club presented more than $7,000 to the parents of two boys who reside in the district and three district employees had their mustaches shaved.
Tory MPP wants more help for sufferers of rare diseases
He is calling for the formation of an all-party select committee of legislators to tour the province, hearing from affected families, doctors, medical experts, rare disease groups and others to recommend changes making the health care system more ...
Ontario MPP proposes all-party committee on rare disease treatment
Ontario PC MPP calls for all-party committee on rare disease treatment
For one rare disease community, a rare moment of hope
When Pat Furlong's two sons were diagnosed in 1984 with Duchenne muscular dystrophy, a rare genetic disease that usually leaves boys wheelchair-bound by their teens and dead by their 30s, doctors told her there was nothing they could do. Over the ...
MPP proposes Ontario all-party committee on rare disease treatment
He applauded Harris for his advocacy on behalf of rare disease sufferers, but wouldn't say yet if the Liberal government will support the motion. Hoskins noted that Ontario is already co-chairing a national committee looking at the same subject, which ...
Waving White Flag, Celladon Merges With Rare Disease Co. Eiger Bio
The entity would carry forward the Eiger name, and the Palto Alto, CA-based company's strategic plan to develop treatments for a variety of rare diseases like lymphedema, pulmonary arterial hypertension, and hepatitis D. All of Celladon's directors and ...
Rare Diseases: The Pharmaceutical Landscape and Opportunity Analysis
PR Newswire (press release)
The service oriented and dynamic nature of the healthcare industry has led to the discovery of a plethora of treatment options for a wide range of ailments. However, there are certain diseases, termed as rare, that continue to remain untreated and ...