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October 5, 2015

TOPIC: Featured News, Sticky Posts for Homepage, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

Narcolepsy Network

Posted by Christina Jensen
Feat Image

The Narcolepsy Network is a national voluntary organization that was formed to serve the needs of people with narcolepsy. Narcolepsy Network is gearing up for their annual conference which will be taking place this coming weekend, October 9-11 in Minneapolis, Minnesota. Click here to learn more about the must attend conference for those living with narcolepsy.

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October 5, 2015

TOPIC: Featured News, Get Involved, Research

The Undiagnosed: Orphans of the Rare Disease Community

Posted by Paul Melmeyer

While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and effective treatments, and even if such treatments exist, a multitude of reimbursement difficulties await.  Rare disease patients often wait years for an accurate diagnosis, as the medical community may… Read More

September 30, 2015

TOPIC: Patient Stories

Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity

Posted by Jennifer Huron
rare disease omphalocele

“We are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.”

A rainbow baby is a baby born after a miscarriage, stillbirth, or infant loss.  We had never heard the term before Obie, say parents Elizabeth and Chris.

Oberon (Obie)… Read More

September 29, 2015

TOPIC: Advocacy

NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act

Posted by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday’s approval of the Ensuring Access to Clinical Trials Act (S. 139) in the United States House of Representatives.

The House of Representatives echoed the U.S. Senate and showed its commitment to 1 in 10 Americans and… Read More