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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

September 28, 2015

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

Dravet Syndrome Foundation

Posted by Christina Jensen
Feat Image
Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted… Read More

September 24, 2015

TOPIC: Featured News, Patient Stories

Jill Zeigler’s Story: Life with aHUS

Posted by Emily Fishman
Jill Ziegler, patient

“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.”

At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks spent in and out of different hospitals, Zeigler finally learned what the cause had been: an extremely rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). This disease,… Read More