To Top

May. 27, 2016

TOPIC: Featured News, Medical, Patients & Members

NORD Members Share Great Resources for ER Visits During #RareERChat

Posted by Mary Dunkle

Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire family.

For that reason, NORD was delighted to host a tweetchat with Texas Children’s Hospital – one of our nation’s premier teaching hospitals — on “Navigating the Pediatric ER.” We saw this as an opportunity to address a topic of great importance to our members.

As it turned out, the chat was very active and, in fact, was trending for much of the hour. It was gratifying to us to see how many NORD member organizations participated. It was even better to see the wonderful resources our members have developed to help families prepare for pediatric ER visits.

Sample tweets included:

Breathe and realize everyone is doing their best. Your child’s life is what matters and everyone is on the same team. –Cure HHT

Helpful hint for families: Have ER go bag. Fill it with comfortable items, medical records, so you can grab & go when needed.–Hemophilia Federation

Below are some of the resources that were shared by our members:

The United Mitochondrial Disease Foundation’s Pocket Emergency Card

 The FPIES Foundation’s Smart Phone App

Hemophilia Federation of America’s Emergency Room, Hospital, & Clinic Visits Toolkit

Osteogenesis Imperfecta Foundation’s “Handle with Care” Poster

The Mastocytosis Society, Inc.’s Emergency Room Protocol


Missed the chat? See the entire conversation here or on Twitter using #RareERChat.
Do you have resources for ER visits with a rare disease?

Share them in the comments section below.



2 Responses to “NORD Members Share Great Resources for ER Visits During #RareERChat”

  1. Leslie Goolsby says:

    I would just like to know where I can get the best information on systemic mastocytosis. Also, what is the best way to determine what type of systemic mastocytosis? We live in a very small town & my husband hS been back & forth to ER,beung told allergic reaction, which I felt the whole time it was not. Our PCP figured it out FINALLY, but still think further testing meds doing, as she is also unfamiliar with the disorder, other than what she’s read. He has done steroids _ is on antihistamine, another med, and has epipen. Just hard to get much in a one traffic light town. Each episode is worse & he almost didn’t make it through the last one. He has a hard time going, very fatigued & little energy, which is not his norm. He keeps saying he has not been right since last episode (08/28/16). Any comments, information would be GREATLY APPRECIATED!!!!!