Families look to orphan drug development at University of Minnesota
Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up. The doctor said he wasn’t growing like a normal 5-year-old, and full body X-rays revealed the abnormalities in his joints. It took two [...]
NIH Coalition of Patient Advocacy Groups Convene – Global Genes Represented
Last week the NIH Office of Rare Diseases Research hosted it’s annual Rare Disease Clinical Research Network meeting. As a prelude to this sold out event, RARE Project was asked to speak about ‘Grassroots Activities in Rare Diseases’ of which Global Genes Project/Fund was presented, during the Coalition of Patient Advocacy Groups (CPAG) Meeting. In [...]
Global Genes nomination for 'Most Creative Social Good Campaign'
Got extra love for the Global Genes Project? Yes, click here http://www.vote4hope.org/extra-love-for-global-genes-project/ and nominate “Global Genes Project” for Mashable’s “Most Creative Social Good Campaign.” You can nominate once daily through Monday, November 29, 2010. Thanks to GGP’s social media Guru’s Catherine Calhoun and Janie Marie for all their efforts!!!! Recommend on Facebook Share on Linkedin [...]
Tomorrow is Mesothelioma Awareness Day
Tomorrow, September 26th, the first ever Mesothelioma Awareness Day will be held all over the United States. The event aims to spread awareness about the most aggressive and deadly of asbestos-related diseases. Mesothelioma, or malignant mesothelioma, is a rare form of cancer that develops from the protective lining that covers many of the body’s internal [...]
Children’s Hospital Oakland Receives FDA Clearance to Begin World’s First Cyclodextrin Administration Into the Brains of Twins with Rare and Deadly Cholesterol Disease
Sugar Molecule Used in Common Food and Household Products Like Febreze® Fabric Refresher Called Hydroxypropyl Beta Cyclodextrin (HPßCD) Will be Delivered into Twins’ Central Nervous System in an Attempt to Stop Neurological Progression of Niemann Pick Type C Disease September 23, 2010 Oakland, Calif. – Children’s Hospital & Research Center Oakland announced today that 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 Patient-innovators and advocates will present novel ideas and new ways [...]
Charleston|Orwig Goes Blue For Global Genes Project supporting rare disease!
I’ve heard of going green but going blue is good too. That’s what the staff at Charleston|Orwig, Inc. is doing by wearing blue jeans each day during September. They’re doing it “not for comfort, but for hope.” Wearing jeans serves as a reminder to vote for the Global Genes Project in the online Pepsi Refresh [...]
Why Vote4Hope? How Kickstarting Cures For Rare Disease Through The Pepsi Refresh Project Can Help Kids
A picture of Addi and Cassi’s Supplements, Meds, Pill Crusher, & Syringes To Support Vote4Hope Pepsi Refresh Rare Disease Campaign Running September 1-30, 2010; Pharma and BioTechs Can Make Profits If They Develop Treatments For Kids With Rare Diseases Last week, I thought about trying to raise $250k in the Pepsi Refresh Project for The [...]
Pepsi Refresh Project inspires rare disease groups to compete for much needed funds
The Pepsi Refresh Project is a grants scheme providing millions of dollars to fund good ideas, big and small, that make the world a better place. Each month, one thousand ideas are selected and the public is asked to choose which ones will win a Pepsi Refresh Grant. A total of USD 1.3 million, in [...]
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 [...]