Faircraft Records/Universal Republic Recording artist Chris Mann and Singer/Songwriter Katrina Parker to Perform at Global Genes | R.A.R.E Project’s Tribute to Champions of Hope™ Benefit

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FOR IMMEDIATE RELEASE Actors Jason George, Nestor Serrano and Meagan Tandy will Serve as Celebrity Award Presenters; Henri Termeer, Former President and CEO of Genzyme, will Receive Lifetime Achievement Award DANA POINT, CA – August 30, 2012 – Global Genes | R.A.R.E. Project (www.globalgenes.org) today […]

Global Genes | RARE Project Host Patient Advocacy Summit at the Balboa Bay Club on September 28, 2012

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Join Us September 28, 2012 9am to 3pm Balboa Bay Club, Newport BeachCA   Global Genes | RARE Project will host the first annual Patient Advocacy Summit, where patient community participants can hear directly from and engage in dialogue on various topics to educate and inform.  […]

Global Genes and R.A.R.E. Project Announce Tribute to Champions of Hope™ Gala to Honor Rare and Genetic Disease Pioneers, Innovators and Advocates

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Henri Termeer, Biotech Legend and former President and CEO of Genzyme, To Receive Lifetime Achievement Award; Nominations Now Being Accepted For Medical Care and Research & Science Award Categories DANA POINT, CA – June 27, 2012 – Global Genes (www.globalgenes.org) and the R.A.R.E. Project are […]

Fighting ABCA3 Surfactant Deficiency Since Day One – Meet Brayden

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My name is Amanda Havens and my son Brayden Matheu Pearson was born with a rare genetic disease.  He was born with ABCA3 surfactant deficiency and most do not know about this disease.  He does not produce the surfactant in his lungs to transport the […]

Rare Stories of Hope and Inspiration – Submit Yours Today

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Thank you to all those who have submitted stories of hope and inspiration!  We’ve received many heartfelt stories from parents and patients of those affected with Moebius Syndrome, CPS (Carbamoyl Phosphate Synthetase), Dystonia, undiagnosed, Glut1 DS, Krabbe’s Disease, Charcot Marie Tooth Disorder and many more. […]

Get a Global Genes Car Sticker – Simply Submit Your Rare Patient Story of Hope and Inspiration

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We are looking for Patient Stories of Hope and Inspiration – to be shared with the world every day. Nothing can portray the fight, the struggles, the daily challenges, the joy, the inspiration and the hope as much a story can. As we approach the […]

Clinical Development Program in LAL Deficiency By Synageva

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LAL Deficiency, a lysosomal storage disorder, has early and late onset phenotypes, also referred to as Wolman Disease or Cholesteryl Ester Storage Disease (CESD), respectively. There is no approved treatment for LAL Deficiency.  Interventional research studies are currently recruiting patients for treatment with SBC-102.  SBC-102 […]