When James and Elly Chapple’s first child Ella was diagnosed with a rare disorder that affects one in 800,000 babies, their lives were turned upside downNow they’re determined to raise money that will help Ella’s condition. Karen Wilson hears their storyWatching Ella Chapple run

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A Calgary family whose son has a rare genetic disease is trying to bring together other Canadians suffering the same experiencesEvan Penny, 5, has been diagnosed with a mitochondrial diseaseHe was a happy, healthy child before going in for a routine appendectomy two years ago. He didn't recover p

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Bailey Fox, a spunky, freckled 11-year-old, wanted to run a 5K to raise money to cure her father's diseaseInstead, she walked the race Sunday, but was satisfied with each stepMore than 200 runners, walkers, strollers and rollers turned out for Victoria's first event to raise money for amyotrophic

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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

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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

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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

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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

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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

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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

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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,

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