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May 31, 2016

TOPIC: Advocacy, Patients & Members

Advocacy Alert: Illinois Rare Disease Commission Bill Passes in House

Posted by Tim Boyd

HDR_PolicyAlert_2

Today, HB 4576 passed in both chambers and is now going to the governor.

The House Bill seeks to establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government.  The bill would also provide… Read More

May 31, 2016

TOPIC: Advocacy, Get Involved, Patients & Members

RareAction Network℠ Releases May/June State Policy Legislative Tracker

Posted by Tim Boyd
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: Get Involved, Medical, Patients & Members

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

Posted by Christina Jensen

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: Events, Get Involved, Patients & Members, Research

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

Posted by Christina Jensen
UDN-LOGO
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… Read More