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June 28, 2016

TOPIC: Uncategorized

NORD in the News: Financial Times Highlights NORD’s Training and Advice for Family Foundations

Posted by Jennifer Huron

financialtimesA recent article in the Financial Times (June 24, 2016) looked at the growing impact families have on medical research.  According to the Center of Strategic Philanthropy at the Milken Institute, family foundations provide approximately 3 percent of all medical research funding in the U.S.  Families also help bridge… Read More

June 28, 2016

TOPIC: Press Releases, Medical

NORD Publishes Physician Guide to Mitochondrial Myopathies

Posted by Jennifer Huron

As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders (NORD) has published a Physician Guide to Mitochondrial Myopathies, available free online to medical professionals around the world.

The NORD Physician Guide was written by two widely acknowledged experts on this topic, Dr. Michelangelo Mancuso of University… Read More

June 22, 2016

TOPIC: Advocacy, Get Involved

Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients

Posted by Jennifer Huron


NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients.

The Oregon legislature recently created a Prescription Drug Cost Working Group which will be meeting for the first time this month.

As part of its participation in this… Read More