From Our Affiliates
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Denim Dash: Are YOU Ready to Run for RARE?

Beginning March 21st, supporters from all over…

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RARECast: Startup with NIH Deal Seeks to Speed Drugs for Rare Diseases
The combination of high cost, long development times, and small patient populations for rare diseases is driving new models to accelerate… Continue Reading
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Understanding Pain: Questions on Your Treatment Plans
The management of chronic pain presents significant problems for both the patients and their physcians. The process of evaluating pain… Continue Reading
ABC?s ?Katie? ? Season One
RARE On the Red Carpet: Celine Dion Pitches in for Cystic Fibrosis
Celine Dion is a Canadian singer loved internationally for her sentimental and larger-than-life pop ballads. Often regarded as one of pop… Continue Reading
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“We Called it Bridgetitis” Genetic Sequencing Points to PACS1
My daughter, Bridget, was born with an unknown genetic syndrome. With over 15 specialists caring for her, Bridget continued to mystify the… Continue Reading
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Leading IEP Champions: “Mommy, What Happens After High School?”
The reality is that we as parents have a natural tendency to worry about our child’s future, especially when dealing with a rare disorder.… Continue Reading
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From One Parent to Another: You’re Doing The Best You Can
Growing up I knew I was different from other children. I had little speech until I was six years old. After a surgery on my pallet and… Continue Reading
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Life with Lowe: Communicating with Teachers
As a special needs parent, I feel like I always have to ask more questions or constantly follow-up with questions because if I don’t,… Continue Reading

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