Blog Hop for Rare Disease – Please Read, Share and Raise Awareness!
There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop. Over 40 bloggers united to blog today to raise awareness about this important day and on ways that you can get involved. The statistics around rare [...]
'R.A.R.E.' BOARD OF DIRECTORS AND ADVISORS ANNOUNCED
The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease. Rare disease affects more children and their families then AIDS and CANCER combined worldwide. The RARE Project, developed by various rare disease leaders, is an [...]
World Rare Disease Day for the Joshi Family – A Family Story
I always feel mixed emotions in my community when World Rare Disease Day rolls around each year. I feel empowered because I have been part of The Global Genes Project for over a year and I know I have many tools at my disposal for spreading the word about that initiative and my son’s condition [...]
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 [...]
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 [...]
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community Dana Point, Calif. (June 29, 2010) – Every parent needs a supportive, collaborative network full of information where medical professionals, researchers, patients, parents, advocates and the general public share knowledge about the rare childhood diseases that affect 22.5 million American families. RareSpace is [...]
R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing and Webcast on the Development of Articles for Rare Diseases. This public hearing is intended to gain from health care providers, academia, industry, patients, and other interested persons their perspectives on various aspects [...]
Rare Disease Family in the Limelight! The TODAY Show – Tuesday June 22
Derek Seymour, an 11 year old boy with the rare disease Joubert’s Syndrome, will be on the NBC TODAY SHOW tomorrow morning JUNE 22ND. Please tune in and spread the word about our rare disease friends giving national attention to our community. Al Roker will be visiting the Eagle Mount program in Bozeman, Montana where [...]
Meet Shefali J., Our first guest sibling blogger (age 7).
i have a brother named shaan he has a disabilty called joubertsyndrome he cant walk he cant talk he cant see very well either when he was born he had a little bit of yellow on his skin. he takes therapy he also loves toy with light and sound and that about shaan what makes [...]