World Orphan Drug Congress: Harmonization
Takeaways from the World Orphan Drug Congress R.A.R.E. Guest Blogger: Eileen O’Brien Director, Search & Innovation Siren Interactive The World Orphan Drug Congress, I attended in April consisted of three days jam-packed with presentations and networking. While the event focused on rare diseases and orphan drugs, the scope was still wide and addressed issues ranging from [...]
Getting Out More than You Put In: Advocates for Health
The Afternoon Nap Society Getting Out More than You Put In A Guest Blog submission by: The Afternoon Nap Society It’s a matter of return on investment. We give. We give our time, our energy, our talents. what do we get in return? What do we get out of what we put in? In [...]
Two-time Olympic silver medal winner: A champion for Hope
Adam Nelson Champions Hope Written by: Alan Abrahamson Through the eyes of two families affected by a rare disease, Alan Abrahamson, a seasoned writer for 3 Wire Sports, brings to us an amazing story of hope for Sanfilippo Syndrome and Niemann Pick Type C. In his writings, Alan delivers a realistic view of living [...]
Policy Update – PDUFA
We’re continuing to work on improving PDUFA to allow the FDA additional authority to include RARE disease in the Accelerated Approval Program. You can learn more here from last week’s public call for support and our other public policy blogs. After a very successful response from the patient community last week, today we are mobilizing organizations [...]
Mitochondrial Disease: Jeans for Genes
An Amazing Response To a Simple Campaign Raising Awareness for Rare Disease Day and Mitochondrial Disease Many of us struggle with not knowing how we can make an impact on Rare Disease. Whether we are faced with the day-to-day difficulties of a rare disease itself, or we are passerby’s watching others’ demanding fight – [...]
MarbleRoad: A Storybook Success
Helping To Raise Awareness MarbleRoad, a non-profit based in DC wanted to make a creative impact to raising awareness to families in need. Their mission: ….” to connect people who have complex illnesses with the resources they need to help them improve their lives.” And with the help of RAREProject and others, MarbleRoad accomplished their [...]
It’s a Wrap – World RARE Disease Day 2012
GLOBAL GENES PROJECT E-NEWS DANA POINT, Calif. – The 5th Annual World Rare Disease Day took place February 29, 2012 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years. Once again, Global Genes Project™ helped support and [...]
World Rare Disease Day: A Stunning Show of Support Across The Miles
February 29 was not just another day for the family of a boy named Hayden with ASLD or Adenylosuccinate Lyase Deficiency. HOPE traveled across the miles of the Mississippi Delta to as far north as Kentucky down south through Tennessee, Arkansas, Missouri and Louisiana. It was an incredible show of support for Hayden and all [...]
First-of-it’s-kind iPad Communication App
Gwendolyn Strong Foundation (theGSF) launches first ever iPad Communication App The demand for health information on the web continues to increase. With the utilization of digital products in healthcare, trends toward technological solutions in improving our health is gaining momentum. For those in the Rare Disease Community dealing with physical limitations precluding them from engaging [...]
RARE But Aware: What You Should Know About World Rare Disease Day
RARE Disease Day Blogs and Amylin Pharmaceuticals Since 2010, Amylin Pharmaceuticals, Inc.’s blog, Building Blocks, has continued to bring science, and dedication to changing lives through communication. In Building Blocks - Amylin’s Blog explores top discussions in healthcare, policy, patient commitment and latest scientific advancements in managing diabetes and obesity. Recently, our very own Nicole Boice, [...]