The Language of Hugs

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Sometimes there aren’t easy solutions to complex medical problems. Often, a hug can help. It’s amazing how much pain and anxiety you can relieve with a simple hug. Hugs are also like boomerangs – when you give one, you get one. And who couldn’t use […]

Eminem Takes a Stand to Support Rare Disease charity – StopCAIDNow!

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Eminem Comes Together with Roger Carter as He Takes a Stand to Support StopCAIDnow.org (Grand Rapids MI – July 8, 2011): Multi-platinum hip-hop artist Eminem has joined together with Roger Carter Racing and the StopCAIDnow Foundation for the upcoming ARCA Racing Series Prairie Meadows Farms […]

‘THE HILL’ Reports: Help children with rare diseases get the new medicines they need

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Having a seriously ill child is always difficult and painful. It’s even more so when a child’s illness is one of the 7,000 rare diseases for which cures and treatments are hard to find. Rare diseases affect more than 15 million children in the United […]

ABC News Reports – DNA Sequencing and it's Impact on Rare Disease Family

ABC News reports on The Beery family and their fight to help their children, and to better understand the specifics related to their children’s disease. http://abcnews.go.com/GMA/video/miracle-cure-sick-twins-mothers-quest-for-answers-childrens-medical-problems-health-13873896?tab=9482930&section=1206852&playlist=13874261

CHILDREN’S HOSPITAL BOSTON PARTNERS WITH PFIZER – FOCUS ON ORPHAN AND GENETIC DISEASES

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Children’s partnership with Pfizer: A new way to speed therapeutic development by Nurjana Bachman on June 10, 2011 Over the past nine months, Pfizer has built collaborations with a number of premiere academic medical centers, including Children’s Hospital Boston. Wednesday marked the launch of the […]

RECOGNIZING AND REDEFINING WHAT IT MEANS TO BE A HERO – HUNTER SYNDROME

HERO’S EXIST EVERYWHERE WITHIN  RARE DISEASE, CHILDREN, PARENTS, FRIENDS, FAMILIES, RESEARCHERS  – WHAT AN INCREDIBLE COMMUNITY WE HAVE!   READ ON ~ Many, many people know Nadine, be it on Twitter, Tumblr, or Facebook (and, for a few very lucky people, in real life).  Her spunkiness, […]

PARENT COMMENTS ON REUTERS REPORT – U.S. cancer drugs shortage has doctors scrambling

We were forwarded this editorial by one of our Advisory Board Members, and a parent of identical twins suffering from a rare disease with no current cure.  This family has been spending months getting treatments by a physician who also treats children with cancer.  Our […]