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 [...]
Are You a Blogger? Join our Blog Hop for RARE disease on January 30th!
We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE Disease Day. What is a blog hop? A blog hop is when bloggers write about a common theme/topic on a specific date. The hosting blog (which will be [...]
The Myelin Repair Foundation Aims to Eliminate the Valley of Death
What a great video. Watch to learn why $139 billion dollars invested into medical research only leads to 21 FDA approved drugs. The Myelin Repair Foundation is one of many organizations/RARE advocates working to change this. To learn more about the Myelin Repair Foundation, click here. Recommend on Facebook Share on Linkedin share via Reddit [...]
Wall Street Journal Reports – Do It Yourself Drug Development, With Some Help!
The effort by two families to buy and develop a drug that holds promise in treating Duchenne muscular dystrophy — described today in the WSJ — is the result of an innovative new model set up to support the burgeoning phenomenon of do-it-yourself drug development. Before the Seckler and Wicka families bought halofuginone, a drug that [...]
A RARE REFLECTION ~ 2011
A RARE Reflection As this year comes to a close I felt compelled to take just a few minutes to share my thoughts, hopes and wishes for this upcoming year. But equally important, to reflect on this past year’s journey and how we have come to be where we are at today. There is much [...]
Submit your art & win an iPod Touch!
Calling all artists, kids, parents, friends & family! Share your art that captures the beauty, power, love, pain and courage of the rare disease community. Words from a past winner, we couldn’t have said it better: “ This is so much more than just a simple contest to me; this is about being a part [...]
Costs of Caring for Children with Rare Disease: Online Survey
The daily routines of those who care for children with rare genetic diseases are challenging. In his new book, “The Boy in the Moon,” Ian Brown describes his personal struggle to cope with his son’s diagnosis of cardiofaciocutaneous syndrome. Brown details how he learned to communicate with his son, who is unable to speak, and how [...]
75 Days Until World Rare Disease Day!
It’s December 15th and that means only 75 days left until World Rare Disease Day on February 29th, 2012! The number 75 is significant for the rare community. According to the NIH’s Office of Rare Disease Research, 75% of RARE diseases affect children making this disease category one of the most deadly and debilitating for [...]
Connecticut-based Advocacy for Patients with Chronic Illness files “Friend of the Court” brief in the United States Supreme Court Health Reform Case
Advocacy for Patients in the Supreme Court Connecticut-based Advocacy for Patients with Chronic Illness files “Friend of the Court” brief in the United States Supreme Court Health Reform Case Stating that “universal guaranteed issue, community-rated insurance is the promise of equal access to health insurance and, thus, health care for the chronically ill,” Connecticut-based Advocacy for [...]