Tag: kids

A total of 13 posts are filed under kids
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
Coming_Unglued_Ehlers_Danlos_ Syndrome
Desperate Measures
This is one of the posts from my blog, “Coming Unglued“, about life with Ehlers-Danlos Syndrome which is a rare connective tissue… Continue Reading