The RARE Blog Has A New Home
We want to welcome our Children’s Rare Disease Network followers to the new home of the RARE blog here at the RARE Project. Those of you who have been friends and followers for a long time know that we have been re-branding the RARE Project and re-focusing our Global Genes and Children’s Rare Disease Network [...]
Lady Gaga – ‘Born This Way’
Born This Way Foundation – Launches Feb 29 “Whether life’s disabilities left you outcast, bullied or teased. Rejoice and love yourself today ’cause baby, you were born this way.” by Lady Gaga How many of us have experienced a time when either ourselves or our children have been mocked or teased because of their differences? [...]
RARE DISEASE LOBBY DAY – ADVOCATES WELCOME
Are you an advocate for Rare Disease? Are you interested in furthering the development of treatment options for Rare Disease? Are you wanting to attend but just not sure how to get there? JOIN US AND MAKE SURE CONGRESS HEARS YOUR VOICE! RDLA has $500 travel scholarships available to advocates who wish to attend and [...]
Rare Disease Bloggers Unite With “Blog Hop” to Raise Awareness for World Rare Disease Day 2012 and 1 Million For Rare™ Campaign
PRESS RELEASE Jan. 30, 2012, 5:29 p.m. EST Rare Disease Bloggers Unite With “Blog Hop” to Raise Awareness for World Rare Disease Day 2012 and 1 Million For Rare† Campaign DANA POINT, Calif., Jan. 30, 2012 /PRNewswire via COMTEX/ — The R.A.R.E. Project(TM) ( www.rareproject.org ) and The Global Genes Project(TM) ( www.globalgenesproject.org ), leading [...]
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point, CA) Rare Disease affects 350 million people worldwide, consisting of 7,000+ identified diseases and disorders. Currently less than 5% of all rare diseases have any type of therapy or treatment, and much of the early [...]
ACTION ALERT – World RARE Disease Day at National Institute of Health
Rare Disease Day at NIH (RDD@NIH) On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; [...]
In A Parents Words – Why RARE Disease Needs ULTRA!
Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease Community needs the ULTRA Act of 2012. Please join Roy in viewing his two minute video! And. . . if you feel so compelled, take action!!! ULTRA Act of 2012 – need your support Over 90 organizations have signed on to [...]
HAPPY NEW YEAR! BEST WISHES THIS 2012
From all of us at RARE Project ~ Wishing you a new year filled with HOPE, PROMISE, FAMILY, and PERSPECTIVE! This is an important year for the RARE Disease Community,we invite you to get engaged and spread the word, there is a lot of work to be done. Join us at www.rareproject.org and www.globalgenes.org Recommend [...]
Action Alert: Unlocking Lifesaving Treatments Act – ULTRA Act of 2012
In December 2011, U.S. Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY), two senior members of the Energy and Commerce Committee, introduced bipartisan legislation to help spur the development of treatments for very rare diseases. The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, will improve access to the FDA’s [...]