Rare Disease in the News
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 ...
Woodstock woman rallies community of rare disease patients
Katey O'Donnell holds an executive proclamation signed by Howard County Executive Allan Kittleman declaring February 28, 2015 Rare Disease Day. O'Donnell is working to have the last day in February proclaimed Rare Disease Day for a third year.
Robot ensures teen won't miss school while fighting disease
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 ...
Panthers inspire family of baby facing rare disease
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 ...
Nine-year-old Medina girl loses battle with rare disease
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 ...
Germinaro is Rare Disease Champion Award Finalist
PHILADELPHIA – Kaleb Germinaro, a junior member of the football team, was named one of six finalists for the Rare Disease Champion Award presented annually by Uplifting Athletes. An awareness campaign powered by Uplifting Athletes, the Rare ...
Budget Cuts Impact People With Rare Diseases; Tax Implications Of OU Retirement Proposal
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 ...
Lonely 'Tree Man' who grew 'roots' dies from rare disease without finding dream love
A lonely father nicknamed 'Tree Man' who was ditched by his family because of his rare disease has died after a long battle with illness. Dede Koswara died in the Hasan Sadikin hospital in Badung, Indonesia, on the morning of January 30. Koswara ...
Indonesian 'Tree Man' Dies Aged 42 After Years Of Battling Rare Illness
Man who suffered from limbs like TREE TRUNKS dies
Community rallies for Big Spring student with rare disease
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 ...
Group gathers to bring awareness to rare diseases affecting Oklahomans
Friends, family members and caregivers gathered at the Oklahoma Capitol on Monday for Rare Disease Awareness Day. The event works to educate the public and give a face to a variety of rare diseases, including some with names too difficult to pronounce.