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Wednesday, March 04, 2015

Michigan highlights Rare Disease Day, recognizes importance of newborn ...
Midland Daily News
Nearly one in 10 Americans — or 30 million people — live with a rare disease, and two-thirds of these individuals are children. To help raise awareness and highlight the importance of Michigan's Newborn Screening Program,Gov. Rick Snyder declared ...

Wednesday, March 04, 2015

Upcoming fundraisers set for Milan woman suffering from rare disease
Heritage Newspapers
The story of rare diseases comes closer to home with local resident Danielle Peladeau fighting for her life traveling to and from Milan to Chicago preparing for a stem cell transplant. She has a progressive disease and there is no cure like many other ...

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Wednesday, March 04, 2015

Yibada (English Edition)

Rare Disease Awareness Month Commences, Theme Focuses on ...
Yibada (English Edition)
International Rare Disease Day is a global awareness campaign commemorated every last day of February. (credit : asbestos.com). An opening ceremony for the awareness month for the global celebration of Rare Disease Day was recently held in Beijing, ...

Tuesday, March 03, 2015

Hartford Courant

North Haven Boy Advocates for Rare Disease Awareness with Sen. Fasano ...
Hartford Courant
Hartford - State Senator Len Fasano (R-North Haven) and State Representative Dave Yaccarino (R-North Haven) welcomed a special guest to the state capital last week to help bring awareness to a rare disease and urge state lawmakers to support effected ...

Tuesday, March 03, 2015

Boston magazine's Boston Daily (blog)

Service Dog Helps a Local Fourth Grader Manage Rare Disease
Boston magazine's Boston Daily (blog)
As a service animal, George helps Bella tackle the mobility challenges she faces as a complication of Morquio Syndrome, a rare disease that affects just 3,000 people worldwide. The condition is one of many that activists seek to raise awareness of as ...

Tuesday, March 03, 2015

RGI Launches Rare Disease Research Challenge
GenomeWeb
The RGI is partnering with 18 technology firms and research services organizations to support research into rare diseases and efforts to develop therapeutic options for patients suffering from these ailments. The list of partner groups includes Maverix ...
Taconic Biosciences Support Helps to Advance Rare Disease ResearchMarketwired (press release)

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Tuesday, March 03, 2015

"Menkes Disease: Finding Help and Hope," a short documentary on a rare disease
Boing Boing
Lucas is six years old and has a rare genetic disorder called Menkes Disease. It prevents him from metabolizing copper. Boys who get treatment in the first ten days of life can have long and relatively normally lives. If the disease is not detected and ...

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Tuesday, March 03, 2015

Penn State News

Nursing students at Hershey wear jeans to support Rare Disease Day
Penn State News
Instructor Kerri Nelson's Nursing 350 class (Professional Role Development II) at Penn State Hershey has been discussing genetics and disease over the last several weeks. In support of Rare Disease Day on Feb. 28, several students wore jeans ("genes ...

Tuesday, March 03, 2015

Upcoming fundraisers set for Milan woman suffering from rare disease
Heritage Newspapers
The story of rare diseases comes closer to home with local resident Danielle Peladeau fighting for her life traveling to and from Milan to Chicago preparing for a stem cell transplant. She has a progressive disease and there is no cure like many other ...

Tuesday, March 03, 2015

WalesOnline

A new strategy to tackle rare conditions from Spina Bifida to sickle cell ...
WalesOnline
An action plan plan is being launched by the Welsh Government today to tackle rare diseases. The plan sets out expectations placed on the Welsh NHS to treat rare diseases in people of all ages, wherever they live and whatever their circumstances. A ...
New plan to tackle rare diseases in WalesITV News

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