Rare disease facts

Are You a Blogger? Join our Blog Hop for RARE disease on January 30th!

By Meme Fehmers on December 29, 2011

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 [...]

Posted in Featured, Global Community, Global Genes Project | Tagged blog hop, bloggers, cause bloggers, Children with Rare Disease, Community, disease, get involved, Global Genes Project, public awareness, RARE Blog, rare conditions, Rare Disease, Rare disease facts, rare project, Undiagnosed, World Rare Disease Day | Leave a response

Nominate Your Rock Star of Science!

By nboice on September 3, 2009

Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s Rare Disease Network is proud to be affiliated with this important initiative! Geoffrey Beene Gives Back® teamed up with GQ Magazine to create a philanthropic campaign pairing A-list rock stars and celebrities with the [...]

Posted in Bench to Bedside, Featured | Tagged Capital Hill, Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, CONGRESS, disease, Eric Topol, FDA, Francis Collins, genetic conditions, Genetics, Geoffrey Beene, Geoffrey Beene foundation, GQ Magazine, House of Representatives, information, kids, National Institutes of Health, NIH, Non-Profit, orphan drugs, pediatric rare disease, public awareness, Rare disease facts, rare disease treatments, Rock Stars of Science, scientific research, Seal, Senate, The Project Charity -- The Children's Rare Disease Network | Leave a response

Searching for a Cure – Patient Perspective Podcast #1

By nboice on July 13, 2009

In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by the disease typically leaves these children wheelchair-bound by age 10 [...]

Posted in Bench to Bedside, Family Life, Featured | Tagged Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, Cure Duchenne, DISABILITY, disease, Duchenne, Duchenne Muscular Dystrophy, FDA, Non-Profit, pediatric rare disease, public awareness, rare disease and children, Rare disease facts, rare disorders, The Project, the project charity, The Project Charity -- The Children's Rare Disease Network | Leave a response

CNN Story Highlights Global Problem Facing Millions Suffering From Rare Diseases

By Chris Hempel on June 5, 2009

CNN is running a comprehensive package about rare diseases and the crisis patients with rare diseases are facing with by being priced out (or left out) of the drug development market. The CNN story discusses the fact that 6800-7000 rare diseases are still mostly overlooked by pharmaceutical companies because of the small patient population and [...]

Posted in Featured, News | Tagged CNN, Director of NIH, Eurordis, FDA Office of Orphan Drug Development, Genetic Interest Group, List Rare Diseases, National Institutes of Health, NORD, Orphan Drug Act, Rare disease facts, Rare Disease Resource Guide | Leave a response