Rare Disease in the News
Boy, 2, fights rare disease
IT'S A DISTINCTION NO ONE WANTS TO HOLD. AN OMAHA BOY IS ONE OF ONLY 2-THOUSAND IN THE WORLD WITH A RARE DISORDER CALLED 'HUNTER SYNDROME' WITH LITTLE RESEARCH AVAILABLE: HIS FAMILY - IS LEADING THE ...
Children face rare diseases with bravery
(CNN) -- Being diagnosed with a chronic disease -- any disease -- is hard. But imagine first spending months or years going from doctor to doctor, trying to figure out what's wrong. Then, in the end, being diagnosed with a disease few people have ever ...
Teen helps scientists study her own rare disease
This handout photo taken Tuesday, Feb. 25, 2014, provided by The Rockefeller University, shows Elana Simon, 18, of New York, pictured in a laboratory at The Rockefeller University in New York. The teen survivor of a rare liver cancer spearheaded a ...
Teenager helps scientists study her own rare disease
SW Portland woman with rare disease: Scleroderma 'feels like your skin is ...
Liz Orem-Bedel and Lilliane Grahek at at last year's Stepping Out to Cure Scleroderma benefit walk. Orem-Bedel said Grahek, whose leg has been damaged by scleroderma, has inspired her to find other children in Oregon with scleroderma. ( Janine ...
Cure for Salina boy's rare disease comes at a heavy price
Derek was diagnosed with Kostmann's Syndrome, a congenital disease that eventually mutates into Acute Myeloid Leukemia or AML. The illness has killed the white blood cells in Derek's body, meaning even the common cold could prove to be fatal for his ...
Raising awareness on National Rare Disease Day
Quad City Times
On Facebook, search for "mediastinal fibrosis." That will direct you to a page put together by Sharon Fry of Davenport. It features the medical health experience of her son, Cody Fry, 22, also of Davenport. The previously healthy young man has the rare ...
4 Rare Diseases You Probably Didn't Know About
Shire Recognizes Rare Disease Day 2014
Feb. 28 is 'International Rare Disease Day'
Bangor Daily News
Kennebunk mom who died from rare disease recalled as a 'hero'
Bangor Daily News
KENNEBUNK, Maine — Kennebunk mother Sandi Tucker Kennedy, described as patient and kind with a contagious smile and laugh, died Monday from a rare disease. Kennedy, a 38-year-old mother of four, lost her battle with Creutzfeldt-Jakob disease, ...
Young mother of four dies from rare disease
Maine Woman Dies Of Rare Brain Disease Related To 'Mad Cow'
FDA Speeds Innovation in Rare Disease Therapies
Patients often need advocates, and that can be especially true for people with a rare disease, who have unique problems and may have little or no support or available treatment. The Food and Drug Administration (FDA) is committed to helping patients ...
On the Day World Recognizes 350m Rare Disease Sufferers, Quintiles ...
Texas Brothers Diagnosed With Rare, Deadly Disease
They discovered that Alport is a rare genetic disorder that attacks the connective tissue of the kidneys. The first symptoms are blood and high protein levels in the urine. Because the ears and eyes share a similar type of connective tissue with the ...
Rare Disease Day Approaches
Column: Trail races put spotlight on rare diseases
The Race for R.A.R.E. – a 5K and 10-mile trail race – returns to George Poston Park on March 22. The two races, which benefit the Joubert Syndrome and Related Disorders Foundation, start at 8 a.m. at the park, 1101 Lowell-Spencer Mountain Road, ...