Tag: kids

A total of 14 posts are filed under kids
Preventing Bullying and Promoting Rare Awareness This School Year
By Lisa Moreno-Dickinson  Are you contributing to the confusion? Making sure rare disease is understood by your child’s classmates can… Continue Reading
MarbleRoad: A Storybook Success
MarbleRoad, a non-profit based in DC  wanted to make a creative impact to raising awareness to families in need Their mission: ….” to… Continue Reading
EveryLife Art Contest – Today is the Day!
Still interested in the EveryLife Art Contest? Today is the final day for submissions! Submit your art by 5 pm PT. Just upload a photo of… Continue Reading
NIH Coalition of Patient Advocacy Groups Convene – Global Genes Represented
Last week the NIH Office of Rare Diseases Research hosted it’s annual Rare Disease Clinical Research Network meeting.  As a prelude to… Continue Reading
Learning to balance privacy and the call of advocacy
As with anything, it turns out there is learning curve to using my personal blog as a platform for advocacy. It is a challenge that I am… Continue Reading
R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing… Continue Reading
Letting Go . . . A Little Bit
Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I… Continue Reading

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