Non-Profit

Families look to orphan drug development at University of Minnesota

By nboice on September 29, 2010

Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up. The doctor said he wasn’t growing like a normal 5-year-old, and full body X-rays revealed the abnormalities in his joints. It took two [...]

National Institutes of Health news that caught my eye this week.

By Catherine Calhoun on October 6, 2009

Here are a few NIH related items that Children’s Rare Disease Network folks might find interesting. 1. Share your health experiences with NIH! Information gathered will assist the agency in developing and disseminating health, medical, and scientific information to a broader variety of audiences. The request for information may be completed online in English or [...]

Posted in Featured, News | Tagged childrens rare disease network, Collaboration, Director of NIH, Francis Collins, National Institutes of Health, Non-Profit | Leave a response

Save the Date! Conferences of interest to parent advocates!

By Catherine Calhoun on September 8, 2009

Here are some upcoming conferences that parent advocates and advocacy groups might be interested in: Gov 2.0 Expo in Washington, DC on September 8, 2009. The FEAST Conference in New York City, NY on October 1, 2009. American Academy of Pediatrics in Washington, DC on October 17 – 20, 2009. Bone and Joint Decade Global [...]

Posted in News | Tagged American Academy of Pediatrics, Bone and Joint Decade Global Network Conference, Burrill Personalized Medicine Meeting, Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, conferences, CONGRESS, disease, FDA, FEAST Conference, Gov 2.0 expo, information, National Summit on Disability Policy, Non-Profit, NORD, Partnering for Cures, pediatric rare disease, Personal Democracy Forum, public awareness, rare disorders, TED2010 | 2 Responses

Nominate Your Rock Star of Science!

By nboice on September 3, 2009

Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s Rare Disease Network is proud to be affiliated with this important initiative! Geoffrey Beene Gives Back® teamed up with GQ Magazine to create a philanthropic campaign pairing A-list rock stars and celebrities with the [...]

Posted in Bench to Bedside, Featured | Tagged Capital Hill, Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, CONGRESS, disease, Eric Topol, FDA, Francis Collins, genetic conditions, Genetics, Geoffrey Beene, Geoffrey Beene foundation, GQ Magazine, House of Representatives, information, kids, National Institutes of Health, NIH, Non-Profit, orphan drugs, pediatric rare disease, public awareness, Rare disease facts, rare disease treatments, Rock Stars of Science, scientific research, Seal, Senate, The Project Charity -- The Children's Rare Disease Network | Leave a response

A Rare Disease Thriller?

By nboice on August 21, 2009

If you like thrillers, you’ll love this article. If you like thrillers within thrillers, you’ll like it even more: http://www.nytimes.com/2009/08/18/health/18tran.html?pagewanted=1&_r=1&ref=health Of course, if you were Jessa Perrin and had Wilson’s Disease (link to http://digestive.niddk.nih.gov/ddiseases/pubs/wilson/) — which affects only one in every 30,000 people — or one of her loved ones, this would be a lot [...]

Posted in Family Life, Featured | Tagged Charity, Children, children rare disease, Children with Rare Disease, children's rare diseases, childrens rare disease network, genetic conditions, Genetics, kids, liver transplant, Non-Profit, pediatric rare disease, Rare Disease, rare disorder, saving lives | Leave a response

Searching for a Cure – Patient Perspective Podcast #1

By nboice on July 13, 2009

In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by the disease typically leaves these children wheelchair-bound by age 10 [...]

Posted in Bench to Bedside, Family Life, Featured | Tagged Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, Cure Duchenne, DISABILITY, disease, Duchenne, Duchenne Muscular Dystrophy, FDA, Non-Profit, pediatric rare disease, public awareness, rare disease and children, Rare disease facts, rare disorders, The Project, the project charity, The Project Charity -- The Children's Rare Disease Network | Leave a response

World Rare Disease Day 2009 Efforts Underway!

By nboice on February 23, 2009

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 [...]

Posted in Global Community, News | Tagged Children with Rare Disease, Fragile X, KRNV Channel 4 Reno, Learning Express, Non-Profit, pediatric rare disease, public awareness, Rare Disease, World Rare Disease Day | Leave a response

Albany High School Students Unite To Raise Money For World Rare Disease Day 2009

By nboice on February 17, 2009

Students at Albany High School in Albany, California, are asking classmates, teachers and parents if they can spare some change to help support the first annual World Rare Disease Day, an international event being held February 28, 2009. About 1 in 10 American’s, or 30 million people in the United States, suffer from what is [...]

Posted in Kids Helping Kids | Tagged Albany, Albany High School, California, Children with Rare Disease, El Cerrito, Non-Profit, pediatric rare disease, public awareness, Rare Disease, The Project Charity -- The Children's Rare Disease Network, World Rare Disease Day | Leave a response

BLOG Redesign

By nboice on February 3, 2009

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 [...]

Posted in News | Tagged Charity, Children, communication, help, information, Non-Profit, pediatric rare disease, Rare Disease | 1 Response