Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Rare Disease Industry Leaders and Advocates Honored; Recording Artists Chris Mann, Katrina Parker and Elliott Yamin Gave Touching Performances DANA POINT, CA – October 2, 2012 – On September 27, 2012, rare disease patients, advocates, patient organizations, government agencies, pharmaceutical companies, medical researchers, celebrities, Olympic [...]
Foundation Commissioned Emmy Award-Winning Filmmaker Rudy Poe to Chronicle Challenges in Medical System Facing a Family Battling a Fatal Rare Disease LOS ANGELES, CA – September 19, 2012 – The Ewing Marion Kauffman Foundation (www.kauffman.org), the largest American foundation to focus on entrepreneurship, today announced [...]
Faircraft Records/Universal Republic Recording Artist Chris Mann and Singer-Songwriter Katrina Parker Will Also Perform; Actors Jason George, Nestor Serrano and Meagan Tandy Will Serve as Celebrity Presenters DANA POINT, Calif., Sept. 17, 2012 — Global Genes | RARE Project (www.globalgenes.org) today announced that recording artist [...]
Five years ago, when my husband Armel was 29, he started having recurrent cholangitis and other symptoms related to liver problems. Specialists here in the Philippines found that Armel’s body produces stones inside his liver and bile ducts. Even with surgery, he has recurrent infections. [...]
Chase Community Giving is giving away $5 million dollars to be shared between 196 deserving charities. We hope that Jonah’s Just Begun and Sanfilippo Research Foundation | Ben’s Dream will take first place for $250,000 or second place for $100,000. Please vote for these rare kids [...]
Two year old Amris Bedford, daughter of Marlee Walker Bedford and Ross Bedford, was diagnosed with a very rare and aggressive brain cancer known as AT/RT (Atypical Teratoid Rhaboid Tumor). Amris is currently at St. Jude Children’s Hospital undergoing treatment and has recently started her second [...]
Hannah’s Hope Foundation announced their plans for “Heroes For Hope” in a recent Press Release dated September 5, detailing their efforts to raise funds for a possible cure for Giant Axonal Neuropathy. Press Release September 5, 2012 One of the Wealthiest Women in America Gives $450,000 [...]
