From Our Affiliates

Tag: public awareness

A total of 23 posts are filed under public awareness
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… Continue Reading
Dog-for-Rare
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… Continue Reading
How To Make A Genes Ribbon out of Jeans
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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… Continue Reading
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… Continue Reading
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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… Continue Reading
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… Continue Reading

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