Nature.com Reports – Rare-Disease Studies Seek Online Giving
Website invites micro-donations for unusual illnesses ~ Amber Dance 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 connects [...]
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 that parents raising money for me would be the key [...]
Who is your Rare Disease Roc Doc – Submissions being accepted at Rock Stars of Science
Rock Stars of Science are excepting nominations for rare disease Roc Docs – You can participate and recognize your favorite physician, scientist and researcher today! There is no better time then now, when we are entering the holidays and thinking about all that we are grateful for, to recognize those physcians and scientists that are [...]
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 (www.globalgenesproject.org), a non-profit advocacy organization that aims to raise awareness about the prevalence of rare diseases worldwide, today launched the 7,000 Bracelets [...]
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 Patient-innovators and advocates will present novel ideas and new ways [...]
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 all the time, “Vote 4 Hope”, click here. Find us [...]
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 chosen based on votes, and our rare disease community has [...]
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 [...]
The Global Genes Fund – To Help Bring New Money, Interest and Champions to the Rare Disease Community
Their exists an inherent need to bring more money into the rare disease community to fund research. Individual rare disease specific organizations work tirelessly to try and raise capital to fund various research projects, with the hope of bringing new therapies, treatments and cures to their communities children. Recently Jonathan Jacoby, CEO RARE Project and [...]