Tag: social media

A total of 19 posts are filed under social media
Woman With Rare Condition Says Social Media Saved Her Life
(Source) An Evansville woman suffering from an extremely rare condition feels as if Facebook saved her life. Natalie Embry’s condition is… Continue Reading
Rare Parenting: Is My Facebook Profile My Identity? (Even When I Don’t Tag the Pictures of Me In the Wheelchair?)
By Elizabeth Paddock It’s a blessing and a curse. It’s a network that allows people in and outside of the rare community to… Continue Reading
World Rare Disease Day Success Within the Industry: Premier Gets Employes Excited About World Rare Disease Day
Since rare disease is one of Premier’s core therapeutic areas, it’s always been a goal to help celebrate the movement of Rare Disease… Continue Reading
Life With Lowe: Going Social to Show More Than Just a Disease
I am a pretty private person, however, when it comes to social media, I’m like a lot other parents who brag on their little ones. We all… Continue Reading
Patients Benefit from Open Dialogue and Scientifically Accurate Information on Medicines
Some draft guidances issued by the Food and Drug Administration (FDA) have a more direct impact on patients than others. The Agency’s… Continue Reading
Word Rare Disease Day 2014 Recap: Celebrating in Kenya on Morning Express
Christine Mutena helped spread the word on World Rare Disease Day this year. She had this to say, “The day went well. We used social media… Continue Reading
#HealthTalk: Global Genes Pairs up with EverydayHealth.com for Rare Disease Day Twitter Chat!
Join us Friday, February 28th at 12:00-1:00pm EST for a twitter chat with EverydayHealth.com! We’ll be discussing all things Rare… Continue Reading