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May 23, 2016

TOPIC: Members, Get Involved, Research, Advocacy, Industry, Events, Featured News

NORD Summit 2016

Posted at May 5, 2016 11:32 am by Lisa Sencen


Save the date for the 2016 NORD Summit! Attendees can look forward to:

  • Timely Topics
    • Sessions on genetic innovation, collaborations across borders, reimbursement, pricing and access, off-label concerns, driving progress through policy and more.
  • Inspiring Perspectives
    • Hear from manufacturers, patients, advocates, legislative and regulatory leaders, academics, researchers and more as they trail-blaze the road ahead… Read More

April 22, 2016

TOPIC: Featured News, Advocacy, Get Involved

RareAction Network℠ Releases April State Legislative Tracker

Posted at April 4, 2016 05:41 pm by Heidi Ross


We are making progress throughout the country for the 1 in 10 Americans with rare diseases.

is a list of legislative initiatives that NORD and our network of advocates are actively participating in to better the lives of people and families in the rare disease community.

Don’t see your state… Read More

April 15, 2016

TOPIC: Featured News, Get Involved

A Special Thank You to Volunteers in the Rare Disease Community

Posted at April 4, 2016 05:27 pm by Lisa Sencen

thank you!Volunteer by definition is a person who voluntarily undertakes or expresses a willingness to undertake a service. The role of a Membership Manager at NORD is a very unique and rewarding one. In this role, I have the opportunity to work with NORD’s… Read More

April 15, 2016

TOPIC: Members, Advocacy, Get Involved

Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission

Posted at April 4, 2016 01:51 pm by Jennifer Huron


This week, the Illinois House passed HB 4576. 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 educational resources for elected… Read More

April 7, 2016

TOPIC: Featured News, Industry, Events, Get Involved

Introducing the 2016 Rare Disease Day® Highlights Video

Posted at April 4, 2016 10:07 am by Lisa Sencen

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®.  This is the one day that everyone comes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more around the world. NORD is proud to be the U.S…. Read More