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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

September 28, 2015

TOPIC: Featured News

Dravet Syndrome Foundation

Posted by Lisa Sencen
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 Lisa Sencen

“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

September 24, 2015

TOPIC: Medical, Research

Rare Disease of the Day

Posted by Lisa Sencen

Today’s Rare Disease of the Day is:


Von Hippel-Lindau disease (VHL) is caused by a gene mutation which frequently induces both nonmalignant tumors and malignant tumors (or cancers) that can spread to other organs (become metastatic). Tumors may develop in up to ten different parts of the body. Many of these tumors involve the abnormal growth of blood vessels… Read More