Rare Disease Facts and Figures: 1 in 10 Americans is Living With a Rare Disease
The last day of February has been designated as World “Rare Disease Day” to call attention to the public health issues associated with rare diseases. The Project Charity — The Children’s Rare Disease Network has compiled some facts and figures about rare disease that we thought would be of interest. If you have other facts [...]
World Rare Disease Day 2009 Efforts Underway!
How exciting this week has become. We are proud to be affiliated with children across the country working to create greater public awareness for rare disease! Jackson Watkins, a 6th grader from Southern California, spoke to his entire school about World Rare Disease Day 2009 efforts. His school is participating in ’Change for Change’, a spare [...]
Rare Disease Parent Advocates Joining The Project Charity Blog Team
In an ongoing effort to engage the entire rare disease community, The Project Charity - The Children Rare Disease Network is now working with a number of Parent Advocates representing various rare diseases. Parents can write letters and stories for submission to The Project Charity’s website or can join the Parent Advocacy team representing their [...]
ChaChaCha Changes On The Project Charity's Rare Disease Blog
One of the most important features of The Project Charity website centers on connecting — connecting parents, connecting families and connecting the entire rare disease community. Our blog has, until now, been about the development of our non-profit organization. What will be changing is our blog will soon focus exclusively on issues related to the [...]
BLOG Redesign
Stay tuned. You will soon see a redesign of The Project Charity Blog. We will be working with various talented individuals that will be writing for us – helping build a community of families with experiences to share. We are looking forward to moving our mission forward, building a platform for communication, collaboration and outreach [...]
First 'Lunch & Learn' for The Project
Today we hosted our first ‘Lunch & Learn’. The purpose was to bring together engaged men and women who wanted to learn more about our cause, and it provided an opportunity for our team to tap the expertise of our participants in areas of philanthropy and business but also provided a platform for networking, sharing [...]
Burrill Personalized Medicine Meeting
What we at The Project will be working on bringing you all the updates from industry regarding advancements in Science, R&D, trends in research, innovations, etc. As frustrated as many are with our healthcare system, I can tell you first hand that we are in an era of unprecedented innovation. The greatest discovery in science [...]
BIO Investor Forum
I had the pleasure of being able to attend the BIO Investor Forum this past week, and was able to hear from incredibly innovative Biotech CEO’s discussing their pipeline. It was very compelling to hear more and more of these organizations mentioning some engagement with drugs that are being developed for specific rare diseases. I [...]
STAY TUNED
Within the next week, we will officially be launching The Project – The Children’s Rare Disease Network interim site. This will be a fully functioning site that will allow us to share what we will be building, the site capabilities, what content we will be aggregating and the partnerships we will be creating. It is [...]
Facebook Campaign For Rare Disease Awareness Launched
We just launched our Facebook campaign where we are working to get 1 million people to join The Project Charity – Children’s Rare Disease Network cause. Our hope is to bring greater awareness to the world about children and their families affected by rare disease! We are hopeful we can hit the 1 million mark before the end of 2009 [...]