From Our Affiliates

Tag: social media

A total of 15 posts are filed under social media
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
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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 for Rare Disease Day Twitter Chat!
Join us Friday, February 28th at 12:00-1:00pm EST for a twitter chat with! We’ll be discussing all things Rare… Continue Reading
Study to be Conducted on Fathers of Children with Special Needs and Internet Use
Are you the father of one or more children? Are you 18 years old or older? Is your child under the age of 18? Does your child have special… Continue Reading
#RAREPOV Tweetchat on February 5th to Discuss Joining Together for Better Care
Twitter savvy? Use your 120 for a good cause by joining this week’s #RarePOV tweetchat. Happening on February 5th at 3pm EST, it asks,… Continue Reading
“Staying Active With Neuropathy” Chat, February 12th
The Neuropathy Association is pleased to announce that they will be hosting a Facebook Chat on February 12th that sheds light on the… Continue Reading
Rare Disease
How the Internet Helped Me Cope With My Rare Disease (idiopathic angioedema and chronic urticaria)
I’ve never been one to crave optimism. I didn’t immerse myself in the triumph-over-adversity messaging of the Chicken Soup for the… Continue Reading