Rickshaw Run 2012: Cool Runnings for Sanfilippo Syndrome
On March 22, R.A.R.E. Project announced the amazing endeavors of Joe and Paul, two adventurists who planned to participate in the RickShaw Run to support Sanfilippo Syndrome with R.A.R.E. Project as their charity of choice. On April 6 - Joe and Paul, a.k.a. team Cool Runnings, began their adventures in India to fight for the [...]
Sanfilippo Syndrome: What is a RickShaw?
What is a RickShaw? Good question! The RAREproject received the photo below of a RickShaw by Team Cool Runnings. A RickShaw is a 3 tiny-wheeled vehicle frequently used for carrying passengers in the Middle East. It is meant for short-distances -a direct contrast to the RickShaw Run being held in April which will cover [...]
Charity Tuesday: Courage to Make a Difference
It’s Charity Tuesday and we want to give a shout-out to a new charity called “Courage to Make a Difference” founded by Chris Dutcher. Chris has Hunter Syndrome (MPS II) and wants to spread awareness for all MPS diseases. To learn more, check out the great video below that Chris recently made. (The video was [...]
Advocacy Update and The Flammable Heart Exhibition
The Charles August Long Undiagnosed Diseases Act of 2011; the battle to save community health center funding and keep Medicaid intact; The Walking Gallery; and The Flammable Heart Exhibition.
GLOBAL GENES PROJECT ANNOUNCES “WEAR THAT YOU CARE™” DENIM AWARENESS CAMPAIGN FOR RARE DISEASE DAY 2011
Statistics Show 95% of Rare Diseases Have No FDA Approved Drug Treatments; Only 352 New Drugs Developed and Approved For Tens of Millions of People Since 1983 DANA POINT, Calif. – January 26, 2011 – Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their [...]
Toy Request Application
The Dare To Hope Foundation distributes toys to help brighten the day of children with rare, complex, critical, chronic and undiagnosed medical conditions during treatment, hospitalization, diagnosis and difficult times, as well as for fragile children who are home-bound or hospice-bound. Toys may also be distributed to families of children with complex medical conditions who require assistance [...]
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 [...]
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 [...]
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 [...]