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June 7, 2016

TOPIC: Advocacy, Get Involved

Today, Tell Congress We Need #CuresNow

Posted by Lisa Sencen
HDR_PolicyAlert_2
Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass before the Senate is out of session until after the November election.
Senate Cures (also called the Senate Innovation Act for Healthier… Read More

May 31, 2016

TOPIC: Patients & Members, Advocacy, Get Involved

RareAction Network℠ Releases May/June State Policy Legislative Tracker

Posted by Heidi Ross
RAN_USA_States_MayJune2016RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases.
In this version of the State Policy Legislative Tracker, there is an increase in the bills being supported in both Massachusetts and Tennessee. Learn moreRead More

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… Read More

May 25, 2016

TOPIC: Medical, Patients & Members, Get Involved

NORD Hosts Tweetchat with Texas Children’s Hospital on Navigating the Pediatric ER (May 26)

Posted by Lisa Sencen

May 26, 2016
1:00 – 2:00 p.m. EDT

#RareERChatNORD

A trip to the emergency room with a rare disorder can present challenges. For one,  few members of the ER staff may be familiar… Read More

May 23, 2016

TOPIC: Patients & Members, Research, Events, Get Involved

Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Posted by Lisa Sencen
udn-webinar
The Undiagnosed Diseases Network (UDN) brings together clinical and research experts from across the country to try to solve the most challenging medical mysteries. As part of this project, patients with longstanding, unexplained symptoms can apply to… Read More