May. 25, 2016
TOPIC: Get Involved, Medical, Patients & Members
Posted by Lisa Sencen
May 26, 2016
1:00 – 2:00 p.m. EDT
A trip to the emergency room with a rare disorder can present challenges. For one, few members of the ER staff may be familiar with your condition or how to treat you.
Given that more than half of the 30 million Americans with rare diseases are children, NORD and Texas Children’s Hospital are working together to co-host a tweetchat on the topic of navigating the pediatric ER with a rare disease.
Mary Dunkle, VP of Educational Initiatives at NORD, and Dr. Katherine Leaming, Pediatric Emergency Room Physician at Texas Children’s Hospital, will be tweeting from @RareDiseases and @TexasChildrens, to ask and answer questions.
Join us! The tweetchat is an opportunity for patients, families, physicians and the rare disease community to come together, and connect with resources.
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. Everyone can participate. The only thing you need to participate is an active Twitter account.
How to Participate in the Tweetchat
Join the tweetchat by signing in to your active Twitter account. Enter into the tweetchat at 12:45 p.m. EST on May 26 from the Twitter management tool that you prefer. Join at #RareERChat. 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 #RareERChat in all your tweets! Doing so will make your tweets a part of the actual chat with Mary Dunkle and Dr. Katherine Leaming.
When responding to a question, include the letter “A” followed by the number of the question.
Example Question 1: How many rare diseases are there? #RareERChat
Example Response 1: A1: There are approximately 7,000 rare diseases #RareERChat.