Parent Essay: It All Happens in the Grocery Store.

When you have a special needs child, (or in our case, special needs children) often times you get messages from the “Universe”.  Life is so chaotic and crazy that you just can’t be bothered to stop and listen to people anymore!  You can’t handle the […]

Blog for Rare! Bloggers Around the World Unite to Support World Rare Disease Day 2010 (Feb. 28) #blog4rare


Welcome to the first official “Blog for Rare.” We’re bringing people from across the world together this week in celebration of World Rare Disease Day 2010 (February 28). This post is a mix of web links to specific blog posts and to bloggers who have […]

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Save the Date! Conferences of interest to parent advocates!

Here are some upcoming conferences that parent advocates and advocacy groups might be interested in: Gov 2.0 Expo in Washington, DC on September 8, 2009. The FEAST Conference in New York City, NY on October 1, 2009. American Academy of Pediatrics in Washington, DC on […]

Nominate Your Rock Star of Science!

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 […]

Searching for a Cure For Duchenne – Patient Perspective Podcast #1


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 […]

Survey says: Misdiagnosis of rare diseases is common

No doubt many of you reading the above thought, “Well, I could have told you that!” Here’s a statistic: The  of 5,980 people about the delay in diagnosis for 8 rare diseases in Europe, published in 2004, found that 40% of individuals were initially misdiagnosed. […]