Latest News

Saturday, February 06, 2016

The National

5 things to do: register to take part in Rare Disease Day Cycle Ride or buy tickets for Disney Live!
The National
Register to take part in the Rare Disease Day Cycle Ride, a 12.5-km ride to raise awareness about disorders that affect a small percentage of the population in the UAE and around the world. February 26, 2pm, free, starts from Bikers Cafe, Jumeirah ...

Saturday, February 06, 2016

Letter: Rare Disease Day awareness on Feb. 29
Quad City Times
On the last day of February, millions of people around the world observe “Rare Disease Day.” Each of us knows someone with a rare disease or disorder. In our country, they affect one in 10 people. The 7,000 known rare diseases combine to affect 30 ...

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Friday, February 05, 2016

CapitalGazette.com

Robot ensures teen won't miss school while fighting disease
CapitalGazette.com
The sixth-grade student at Monsignor Slade Catholic School has had a rare disease — acute disseminated encephalomyelitis — since she was nine. She rarely missed school before an MRI revealed lesions on her brain. Emily spent most of her days ...

Friday, February 05, 2016

Boy with Rare Disease Gives Up Birthday Gifts to Help Sick Kids
Parenting Magazine
Chris Baker's 13-year-old son, Brenden, was born with a rare form of dwarfism, but he has a huge heart. He gave up all his birthday gifts to raise money for the local children's hospital that has helped him all his life.

Friday, February 05, 2016

Carlisle Sentinel

Community rallies for Big Spring student with rare disease
Carlisle Sentinel
The Sentinel recently reported on the story of Tara Garman, a 7-year-old Lower Frankford Township girl who was diagnosed with Juvenile Batten, a rare disease that strikes only one in 100,000. Visual impairment is generally the first sign of the illness ...

Friday, February 05, 2016

KGOU

Budget Cuts Impact People With Rare Diseases; Tax Implications Of OU Retirement Proposal
KGOU
For people with incredibly rare diseases, the cuts could be devastating. Tonia Sina's atypical hemolytic uremic syndrome is literally a one-in-a-million diagnosis. Less than 300 people in the U.S. have the disease, according to The Journal Record's ...

Friday, February 05, 2016

myfox8.com

Panthers inspire family of baby facing rare disease
myfox8.com
Every day, she is challenged with caring for someone who is no stranger to challenges. Her son, Jude Sullivan Peters, was born with a rare and lethal form of dwarfism called Rhizomelic chondrodysplasia punctata (RCDP). Fewer than 60 kids have it across ...

Thursday, February 04, 2016

WSOC Charlotte

Panthers inspire family of baby facing rare disease
WSOC Charlotte
Her son, Jude Sullivan Peters, was born with a rare and lethal form of dwarfism called Rhizomelic chondrodysplasia punctata (RCDP). Fewer than 60 kids have it across the world. "My husband and I were told somebody has a higher chance of winning the ...

Thursday, February 04, 2016

Nine-year-old Medina girl loses battle with rare disease
News 10NBC
Nevaeh Roberts, 9, was diagnosed with primary HLH (hemophagocytic lymphohistiocytosis) - a life threatening condition causing a problem with the immune system. She passed away on Tuesday in her mother's arms. Calling hours will be held Friday from 2 ...

Thursday, February 04, 2016

The Cairns Post

Support locals at the Rare Disease Day Fun Run
The Cairns Post
The Cairns 21-year-old, who is ambassador for the 2016 Rare Disease Day Fun Run and Walk, was born with an extremely rare undiagnosed disease that has left her body with a fused spine, physically weak and undeveloped muscle mass. At birth, doctors ...