Rare Pictures of Hope™ – Submit Your Hope Photo Today!
When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s in My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook since last week! Each and every picture touches a string in our hearts and we [...]
NIH Supports Global Genes Project and Jeans/Genes Awareness Efforts
Over the past two years, the Global Genes Project efforts have been highly visible at the NIH for the annual World Rare Disease Day events. In 2012, we presented Dr. Francis Collins and Dr. Steve Groft with a Rare Pictures of Hope™ photo book made by thousands of rare disease advocates. In 2011, Nicole Boice, [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET JUNE!’ I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is “I couldn’t just win the lottery??” I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this disease. Some day it will probably kill me, [...]
75 Days Until World Rare Disease Day!
It’s December 15th and that means only 75 days left until World Rare Disease Day on February 29th, 2012! The number 75 is significant for the rare community. According to the NIH’s Office of Rare Disease Research, 75% of RARE diseases affect children making this disease category one of the most deadly and debilitating for [...]
2011 Partners for Humanity
Charleston Orwig along with SeventhStreet Studios developed a creative ad through Partners for Humanity for the Global Genes Project. The Global Genes Project promotes the needs of the rare disease community, engages the general public and encourages corporate support through our unifying symbol of hope: the blue denim ribbon. Partners for Humanity is an annual program [...]
StopCAIDnow Racing for Rare Disease and Supporting Global Genes!
StopCAIDNow joins forces with Roger Carter Racing to help raise awareness for Childhood Autoinflammatory Diseases and ALL children affected by rare disease. Over 80% of the 7,000 rare disease affect children! StopCAIDNow is working to increase awareness about diseases like Blau Syndrome in addition to ensuring that all rare disease starts building a greater voice. [...]
6th Annual Rare Disease Leadership Summit – Register to attend TODAY!
On the Forefront of Orphan Drug Development – Re-examining the Orphan Drug Act and Key Initiatives Impacting the Clinical, Regulatory and Reimbursement Landscape July 12-13, 2011,Washington, District of Columbia In 2011, CBI is proud to present its 6th Annual Rare Disease Leadership Summit at a critical time for this community. Advocates of the 5,800 rare [...]
Global Volunteer Day at Life Technologies – Rare Disease Supported!
Global Genes Project one of the beneficiaries of Life Technologies Global Volunteer Day 2011! All around the globe Life Technologies volunteers donate their day to help organizations and people in need. Donned in their navy blue ‘Giving Back at Life’ shirts volunteers participated in a variety of activities in cities around the globe. Global Genes [...]
TEXAS CHRISTIAN UNIV AND BUFFALO JEANS UNITE TO SUPPORT THE RARE DISEASE COMMUNITY!
Buffalo Jeans Brand Ambassador, Meghan Chamberlin dons Buffalo Jeans, showing support for Global Genes Project and those affected by rare disease Meghan Chamberlin, was chosen as one of Buffalo Jeans brand Ambassadors with the goal of promoting the Buffalo brand and their products while simultaneously supporting a great cause. Buffalo Jeans has become a corporate [...]