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
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
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 people about… Continue Reading
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