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Archives for: January 24th, 2017

WEBINAR: In-Depth look at the 2016 NORD State Policy Report Card

Written by Christina Jensen on January 24, 2017

Please join NORD Rare Action Network team Tuesday, January 24, 2017 at 3:00pm EST for a webinar to take an in-depth look into the recently published 2016 state policy report card.

Tim Boyd, Associate Director of State Policy will present on the findings in the report card… Read More

NORD Summit 2016

Written by Christina Jensen on May 23, 2016
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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,… Read More

Pennsylvania Rare Disease Day State House

Written by Christina Jensen on March 16, 2016

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for… Read More

Minnesota Rare Disease Day State House Event

Written by Christina Jensen on March 10, 2016

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for… Read More

Illinois Rare Disease Day State House Event

Written by Christina Jensen on March 2, 2016

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state… Read More