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 The Agency’s recent draft guidance on social media could have a direct impact on the ability of me and other patients to get information on […]

Word Rare Disease Day 2014 Recap: Celebrating in Kenya on Morning Express

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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 mostly to spread awareness and to ask people to wear jeans. Yes, it was a huge success given– it […]

#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 Disease–resources, stats, and how patients can receive the most optimum care. Contribute your thoughts using the hashtag #HealthTalk About Global Genes Global Genes is a […]

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 needs? (e.g. ADHD, visual impairment, hearing impairment, hyperactivity, Aspergers, etc.) Participate in a research study at […]

#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, “What does the theme ‘Join Together for Better Care’ mean to you?” Mark your calender! #RarePOV Tweetchat on February 5th at 3pm EST to […]

“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 importance of staying active with neuropathy. In their newsletter, the Neuropathy Association stated: FACEBOOK CHAT: “Staying Active With Neuropathy” WHEN: Wednesday, February 12th, 2014 (7 – 8:30 […]

How the Internet Helped Me Cope With My Rare Disease (idiopathic angioedema and chronic urticaria)

Rare Disease

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 Soul series as an adolescent, nor do I typically share affirmations or cat video pick-me-ups on social media. I’m more inclined to the analytic wisdom of […]