Behind the Mystery of Rare and Genetic Diseases: Lifetime Television

Tune in to The Balancing Act® on weekday mornings 7:00am ET/PT to watch “Behind the Mystery: Rare and Genetic Diseases”.

Our very own Nicole Boice, founder of the Global Genes | RARE Project, joined The Balancing Act on Lifetime Television to talk about how millions of Americans—one in ten—fall through the cracks of medical treatment because there is so little awareness or research funding the […]

Two Hearts Rock Aligns with Students to Assemble 5,000 Denim Ribbons

Two Hearts Rock

On Friday, November 9th, Kerry Hughes and Lori Butler of Two Hearts Rock joined District 95 students of Lake Zurich, Illinois, in assembling Denim Ribbons for an upcoming Rare Disease Awareness Campaign. Two Hearts Rock believes that “music creates unity,” and they strive to use this power […]

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

Chris Mann, Nestor Serrano, Jason George and Katrina Parker

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 ( today […]

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


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


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 ( and the R.A.R.E. Project are […]

Fighting ABCA3 Surfactant Deficiency Since Day One – Meet Brayden


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


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. […]