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May 23, 2016

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

NORD Summit 2016

Posted by Lisa Sencen

RareSummit2016_live

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

May 16, 2016

TOPIC: Featured News

Watch Live: Tomorrow’s Rare Impact Awards Ceremony

Posted by Lisa Sencen
Rare Impact Awards Live Stream: Watch the Ceremony Online
It is almost time for the Rare Impact Awards!  Not able to attend in person? NORD has you covered: join us for the live stream webcast starting tomorrowRead More

May 12, 2016

TOPIC: Press Releases, Medical, Patients & Members, Research, Advocacy, Industry, Events

NORD to Hold Rare Diseases Roundtable

Posted by Jennifer Huron

NORD_RareImpactAwards2016_Program_Page6The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community.

The roundtable will be held at the Warner Theatre in Washington, D.C., where NORD’s 2016 Rare Impact Awards are… Read More

May 11, 2016

TOPIC: Uncategorized

Dr. Arthur Caplan: 2016 Rare Impact Award Honoree

Posted by Lisa Sencen

When he was six years old, Arthur Caplan came down with polio and was temporarily paralyzed. That episode – which included time at Boston’s Mass General Hospital followed by rehab – “always left me with a patient perspective,” Dr. Caplan says.

That perspective and his tendency to be drawn to complex issues have led him… Read More

May 11, 2016

TOPIC: Uncategorized

Dawn Laney: 2016 Rare Impact Award Honoree

Posted by Lisa Sencen

A leading expert in her field, Dawn Laney, M.S., C.G.C., C.C.R.C. is a genetic counselor, instructor, and program leader at Emory University in the Department of Human Genetics.  She manages Emory’s infusion center and lysosome storage disease clinical research, and is a sought-after specialist in Fabry Disease, a rare genetic disorder that can lead to kidney failure,… Read More