MarbleRoad: A Storybook Success
Helping To Raise Awareness 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 RAREProject and others, MarbleRoad accomplished their [...]
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 RareArtist.org and you could win a Visa Gift Card and an iPod Touch! We accept art in the following forms: Painting Photography Mixed Media Collages Pottery Sculptures [...]
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, during the Coalition of Patient Advocacy Groups (CPAG) Meeting. In [...]
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 be the first major hospitalization since I started chronicling his medical journey [...]
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, patients, and other interested persons their perspectives on various aspects [...]
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 a parking lot to embark on the week they’d been [...]
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 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 Vascular form of EDS; two weeks later my son was [...]
Gabe O'Neill on Kids Making a Difference.
In February of 2008, I just happened to catch an interview on TV. It was Charlie Rose interviewing Sir Richard Branson. The focus of the interview was not so much his successes but what he plans to do from here on. Branson introduced me to the concept of “social entrepreneurship” which is very intriguing to [...]
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 is so chaotic and crazy that you just can’t be bothered to stop and listen to people anymore! You can’t handle the things that regular people have to say, so you just [...]
Blog for Rare! Bloggers from around the world come together for rare disease awareness and support for 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 Rare Disease Day 2010 (February 28). This SNiPs post is a mix of web links to specific blog posts and to bloggers who have a connection to rare disease (a blog roll [...]