First-of-it’s-kind iPad Communication Speaking App For Those With Challenging Medical Conditions – Say Hi! ACC


The demand for health information on the web continues to increase.  With the utilization of digital products in healthcare, trends toward technological solutions in improving our health is gaining momentum. For those in the Rare Disease community, dealing with physical limitations precluding them from engaging […]

Children's Rare Disease Network Partners With 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 […]

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, […]

MarbleRoad Comes to the CRDN Blog

An introduction to Howard Liebers of MarbleRoad, who will be blogging weekly on the CRDN Advocacy/Policy channel.

Blog for Rare! Bloggers Around the World Unite to Support 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 post is a mix of web links to specific blog posts and to bloggers who have […]

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 […]

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 […]