Tag: communication

A total of 10 posts are filed under communication
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… Continue Reading
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… Continue Reading
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… Continue Reading
MarbleRoad Comes to the CRDN Blog
An introduction to Howard Liebers of MarbleRoad, who will be blogging weekly on the CRDN Advocacy/Policy channel.… Continue Reading
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… Continue Reading
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… Continue Reading
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… Continue Reading

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm