Reports – Rare Disease Studies Seek Online Giving

The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes accelerated aging. Those wanting to raise awareness about a rare disease will be able to take advantage of an initiative being launched later this year: a website that […]

The Global Genes Fund: Innovations for medical science in the internet age

November 16, 2010 Emil Kakkis, Kakkis Everylife Foundation Blog When I started out doing research and trying to get a simple treatment for a rare disease into the required clinical trials process, I did not realize how difficult it would be to get support, or […]

7,000 Bracelets For Hope™ – A Rare Disease Awareness Campaign


Global Genes Project Launches Blue Denim Inspired ‘Cause Bracelets’ To Be Distributed To Families Facing 7000 Different Types of Rare Diseases DANA POINT, Calif. – November 1, 2010 – The Global Genes Project (, a non-profit advocacy organization that aims to raise awareness about the […]

Patients 2.0 – Health 2.0 – Rare Disease Patients invited!

Join Health 2.0 as they work to plan the next phase of action for patients, citizens and anyone passionate about improving healthcare, working both online and face to face. Wednesday, October 6 from 3-6pm at the San Francisco Hilton in Union Square @ Patients 2.0 […]

Rare Kids Need Your Votes!

{click this logo for fast voting link!} Catch up with the Children’s Rare Disease Network/Global Genes Project idea: Idea Details, Pepsi Refresh Project Idea Page, click here {you can vote on this page, please, every day through the end of September.} Our Campaign Website, all hope […]

Vote4Hope Campaign – from Global Genes Project and Children's Rare Disease Network

Pepsi Refresh Grant Competition inspires rare disease groups to compete for much needed funds! Over the past few months we have had the good fortune of supporting a variety of rare disease initiatives that were all vying for Pepsi Refresh Grant monies.  The winners are […]

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 […]