Children's Rare Disease Network, a top ten.
You’re in the right place at the Children’s Rare Disease Network :: Top Ten (10) You’ve considered the stats of your child’s health condition and you expect to win the lottery very soon. (9) . . . or you expect you might get struck by lightning. (8) You’ve seen courage in your child (and you) [...]
Collaboration is key in rare disease research!
KTVU-TV 2, the leading evening news in the San Francisco Bay Area, today reported on Addi and Cassi Hempel, identical twins affected by a rare disease called Niemann-Pick Type C (NPC). NPC is fatal and degenerative cholesterol disease that is often called the “childhood Alzheimer’s.” What is most interesting about this story is that Dr. [...]
Connecting Children and Families Suffering From Rare Disease
When a child is diagnosed with a rare disease, the child and their family members may have a variety of feelings as a result of the diagnosis. Sometimes it is difficult to share these feelings with others who are not directly affected by the disease. Family members may want to keep their feelings private [...]
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 [...]
Cynthia H. Designs and Herrington Teddy Bear Company To Help Children With Rare Disease
The Project Charity – The Children’s Rare Disease Network is pleased to announce two new product partnerships. Famed Southern California jewelry designer Cynthia Holvey of Cynthia H. Designs will be creating a special commemorative bangle bracelet that includes sketches from children affected by rare disease. This inspirational bracelet will be available for purchase on our [...]
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 [...]
Facebook Rare Disease Cause – Join our group today!
We are working daily to try to build out a broad health social network on Facebook that will support teh mission of the The Project Charity - The Children’s Rare Disease Network. The beauty of social networking sites like Facebook and Linked In are that they can generate tremendous awareness and support for a cause like ours [...]
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 [...]