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 [...]
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, [...]
Twitter: Coming Together for Rare Disease
As a mom with a child with rare disease, I can relate to the needs of other parents and caregivers about raising awareness for their children. Most of my blog entries are either about my son’s or other children’s rare disease, and my tweets on Twitter are typically about RARE Disease advocacy. The other day, [...]
Lady Gaga – Born This Way Foundation
On February 29, 2012 – Lady Gaga is launching the ‘Born This Way Foundation’ … See this post for more comments here: http://rareproject.org/2012/02/10/lady-gaga-born-this-way/ On February 29, 2012 – World Rare Disease Day is celebrating the Rare Disease population, instilling hope and inspiration to others, creating awareness for their inherent disabilities and often incurable chronic diseases. We’re [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET JUNE!’ I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is “I couldn’t just win the lottery??” I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this disease. Some day it will probably kill me, [...]
RARE Disease Lobby Day – February 28 Washington, DC
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week! Join us and make sure Congress hears your voice! Lobby Training Breakfast 7:30a.m. – 9:30a.m. Darlington House 1610 20th ST NW Washington [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET THE SPOONER FAMILY!’ Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooners have faced greater challenges and discovered even greater meaning in their lives through the caring [...]
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 Lobby Day
WHEN: February 28, 2012 WHERE: Washington, DC WHO: RDLA RDLA (Rare Disease Legislative Advocates) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease [...]
EVERYLIFE Art Contest – Extended Deadline for Children & Teens
Submit art by Tuesday, February 7, 2012 at 5 pm PT To encourage more children (ages 5-11) and teens (ages 12-17) to enter the contest, we have extended the entry deadline by 1 week.Easy to enter! Just upload a photo of your art on RareArtist.org and you could win a Visa Gift Card and an iPod Touch! We [...]