In celebration of Rare Disease Day 2018, NORD will moderate a tweetchat on the important topic “What To Do If You or Your Child Receive a Rare Disease Diagnosis” with co-hosts Boston Children’s Hospital and The Mighty.
Join us! The tweetchat is an opportunity for patients, experts, doctors, the rare disease community and the public to come together on Rare Disease Day, ask questions, get answers, and raise important awareness.
NORD will be live-tweeting from @RareDiseases with Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Editor. Phillip L. Pearl, M.D., Director of Epilepsy and Clinical Neurophysiology at Boston Children’s Hospital and William G. Lennox Chair and Professor of Neurology at Harvard Medical School, will be joining the chat from @BostonChildrens. Ashanthi De Silva, Rare Disease Editor for The Mighty, a digital health community created to empower and connect people facing health challenges and disabilities, will be joining from @TheMightySite.
We look forward to having you participate as we work together to bring widespread recognition to rare diseases and the 30 million Americans who battle them.
How to Join
How to Participate in the Tweetchat
Join the tweetchat by signing in to your active Twitter account. Enter into the tweetchat at 12:50 p.m. EST on Feb. 28 from the Twitter management tool that you prefer (such as tweetdeck.com
). Join at #RDD18Chat
. Once you are signed in, you are welcome to tweet comments, facts, images and videos as often as you like.
Remember to use the hashtag #RDD18Chat
in all your tweets! Doing so will make your tweets a part of the actual chat.
When responding to a question, include the letter “A” followed by the number of the question. For example:
Example Question 1: Q1: How many rare diseases are there? #RDD18Chat
Example Response 1: A1: There are approximately 7,000 rare diseases #RDD18Chat.
Keep the Conversation Going
After the tweetchat, you can continue the conversation using #RareDiseaseDay
, the official, global hashtag being used in the U.S. and around the world. See you on Twitter!
Help Promote the Tweetchat
We invite you to share this information through Facebook, Twitter, LinkedIn, newsletters, email blasts or any other communications channels you use.