Genetic Diseases In Children (GDC) Conference – A Grand Slam!
The Wadsworth Center, March 7-10, NYC at, was host to the Genetic Diseases In Children Conference. My recommendation . . . make it to the meeting next year! Here’s why! Most conferences discuss theories, postulate and talk a lot about ‘what can and should be done’ about a topic. The GDC Conference created an agenda [...]
Introducing Dr. Brandon Colby – Rare Disease Patient, Physician, CEO and Educator
A Man With A Mission, Championing Rare Disease, Meeting it Head On! Meet Dr. Brandon Colby, someone who has been involved in the genetics field for his entire life, first as a patient, then as a researcher, and now as a practicing physician. Because he was born with a rare genetic disease (Epidermolysis Bullosa Simplex) [...]
The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund DANA POINT, CA – September 1, 2010 [...]
FDA approval of Geron’s Embryonic Stem Cell Trial Has Widespread Implications For Rare Disease
In its Friday press release, Geron, the California-based biotech, announced the FDA’s clearance to proceed with its embryonic stem cell trial for spinal cord injury. This will be the first clinical trial to test the use of embryonic stem cells in human patients, and it will have widespread implications for many other common and rare diseases, including Canavan disease.
Outsider’s Perspective: NTSAD 2010 Family Conference
This past weekend I attended the National Tay-Sachs and Allied Diseases Annual Family Conference in St. Petersburg, FL, and I don’t think there are words that can truly describe the experience. The unique combination of sadness and hope was something I have never experienced anywhere else. As a newcomer to the rare disease community, I [...]