The Power of Rare Disease Patients
A Guest Blog Post By Wendy White, Founder & President of Siren Interactive Thanks to the Pew Internet Foundation, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them “healthcare superheroes.” Through [...]
February 29 – A Celebration of Unity
The Month of February During the month of February, much of the American population will be celebrating historical events, special interest groups and campaigns. Some of these include Black History, American History, Children’s Dental Health, and American Heart Month. Internationally recognized events in February include National Embroidery month (my favorite), Wild Bird Feeding, Cherry and [...]
PATIENT STORIES OF HOPE AND INSPIRATION -’MEET ALEJANDRA!’
My name is Alejandra Islas. I’m a kindergarten teacher, living in Mexico City, Mexico. I was diagnosed with Hypereosinophilic Syndrome (HES), in 1998, at a time when medical databases showed only six cases with symptoms similar to mine, and with a life expectancy of 6 months. My symptoms started 13 years [...]
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 [...]
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 [...]
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 [...]