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 [...]
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community Dana Point, Calif. (June 29, 2010) – Every parent needs a supportive, collaborative network full of information where medical professionals, researchers, patients, parents, advocates and the general public share knowledge about the rare childhood diseases that affect 22.5 million American families. RareSpace is [...]
"How To" – A Jean Ribbon for Global Rare Disease Day
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New York Times Reports on Cystic Fibrosis Advancements
For everyone planning to attend Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data, NIH/ORDR Workshop in Bethesda, Maryland on January 11-12, 2010 : Must read this fascinating article in the New York Times this week on cystic fibrosis, article here. Also, don’t forget to check out [...]
Rare Disease Research Conference at NIH in Jan. 2010, registration is close to full, act fast.
Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data. NIH/ORDR Workshop in Bethesda, Maryland on January 11-12, 2010. Over 200 people are registered and registration will close at 250 people. :: Catherine Calhoun Recommend on Facebook Share on Linkedin share via Reddit Share with Stumblers Tweet about it [...]
Save the Date! Conferences of interest to parent advocates!
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 [...]
Nominate Your Rock Star of Science!
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 [...]
Survey says: Misdiagnosis of rare diseases is common
No doubt many of you reading the above thought, “Well, I could have told you that!” Here’s a statistic: The of 5,980 people about the delay in diagnosis for 8 rare diseases in Europe, published in 2004, found that 40% of individuals were initially misdiagnosed. For many of the survey respondents, misdiagnosis led to inappropriate medical [...]
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 [...]