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 connect people who have complex illnesses with the resources they need to help them improve their lives.”  And with the help of R.A.R.E. […]

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 your art on and you could win a Visa Gift Card and an iPod Touch! We accept art in the following […]

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 this sold out event, RARE Project was asked to speak about ‘Grassroots Activities in Rare Diseases’ of which Global Genes Project/Fund was presented, […]

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 having to deal with the more lately, as the date for my son’s next surgery looms near. This will […]

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 and Webcast on the Development of Articles for Rare Diseases. This public hearing is intended to gain from health care providers, academia, industry, […]

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 waited with my son as the crowd behind us pressed in.  Sixth grade students  from all over our county had descended on […]

Desperate Measures

Coming_Unglued_Ehlers_Danlos_ Syndrome

This is one of the posts from my blog, “Coming Unglued“, about life with Ehlers-Danlos Syndrome which is a rare connective tissue disorder in which the body’s ability to produce enough collagen is severely limited due to genetic mutations.  In 1998, my first husband died from the […]