On September 19 last year then nine-year-old Christa Brumant awoke at about 6 a.m. with terrible abdominal pains and was taken to hospitalFive hours later Christa was paralysed from the waist down’She said ’mummy I can’t walk’,’ her mother, Ramona Eligon, recalledCh

read more>>

The clues to Tiffany House's world lie before her at a biweekly appointment that's a crucial part of her lifeHouse, a student at the St. Mary's University School of Law, sits in her black wheelchair that is pushed under a table with her MacBook sitting atop a book on elder law. She breathes throug

read more>>

The winner of Best Documentary Short Category, is “Music by Prudence,” directed by Roger Ross Williams, and starring Prudence MabhenaThe 33 minute documentary, focuses around a gifted young woman Prudence, who suffers from arthrogryphosis, a rare disorder which severely deforms the joi

read more>>

STOCKHOLM -- Sweden’s Karolinska institute says it will give an honorary degree of medicine to Canadian-American actor Michael J. Fox for his work to raise funds and awareness for Parkinson’s diseaseThe institute, which awards the annual Nobel Prize in medicine, says the Michael J. Fox

read more>>

Rare Disease made the final round for the 2010 Change.org Top Ideas ContestThis is great news -- obviously a topic that is top of mind for many both in and outside of the rare disease community! This idea beat out hundreds of others to make the finals and now must reach the top 10 out of 60 final

read more>>

WESLEY CHAPEL -- They spend their afternoons lying on air mattresses, watching cartoons, prisoners in their own bodiesThe Surut twins are 6 1/2 years old. While most of their peers play soccer, practice ballet and devour chicken nuggets, Sydney and Delaini can't walk or even hold up their heads. B

read more>>

WALTHAM -- Amber Bobnar said her 4-year-old son Ivan is a different boy when he's swimming in the heated waters of the therapeutic pool at the Walter E. Fernald Developmental Center"For some reason, he just seems to come alive," she saidIvan has a rare genetic disorder known as Joubert Syndrome,

read more>>

Durham, North Carolina (CNN) -- The first week of each month, Karen and Jerry Vaneman pack their car for a four-hour drive from Asheville, North Carolina, to the medical complex at Duke UniversityInside the Preston Robert Tisch Brain Tumor Center, Karen waits patiently as a parade of doctors and t

read more>>

Matthew Deffebach returned to his labor and employment practice at Haynes and Boone in Houston on Monday, about a month after the 39-year-old partner donated a kidney to the son of Iva York, a longtime staffer at the firmThe date of Deffebach's return is particularly fitting because it was the sta

read more>>

This is a story about the strength of one Kentuckiana family and their search for a medical breakthroughThomas Milburn and Stacy Webb live in JeffersonvilleLast year their lives were turned upside down when they discovered both of their seemingly healthy sons had a rare, terminal disease3-year-o

read more>>