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January 15, 2015

TOPIC: Research

Registries for Rare Diseases: Involve the Patient

Posted at January 1, 2015 12:47 pm by Jennifer Huron

In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD marshallboard member, talks about the importance of patient registries for rare diseases, and the role that NORD’s patient registry program has in helping… Read More

December 23, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patient Stories, Patients & Members, Research

The Will to Live and the Strength for a Cure

Posted at December 12, 2014 06:15 am by Lisa Sencen

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he was three-months old, a muscle biopsy revealed he had… Read More

December 23, 2014

TOPIC: Advocacy, Featured News, Patient Stories, Patients & Members, Research

Multiple Endocrine Neoplasia Type 1: One Family’s Fight

Posted at December 12, 2014 06:02 am by admin

Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her family who received the first diagnosis.

Eleven years ago, Vanessa moved to Chicago, Illinois. While pregnant with twins, she began to experience some unusual symptoms. “I started to feel weird,”… Read More

December 23, 2014

TOPIC: Advocacy, Featured News, Medical, Patient Stories, Patients & Members, Research

Taking Action for ACD

Posted at December 12, 2014 05:54 am by admin

On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. “Around midnight on the day of my son’s birth, my husband and I were alone in our room taking turns holding our baby and marveling at how he could… Read More

December 18, 2014

TOPIC: Advocacy, Events, Featured News, Industry, Medical, Patients & Members, Press Releases, Research

The Will to Live and the Strength for a Cure

Posted at December 12, 2014 05:54 am by admin

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he was three-months old, a muscle biopsy revealed he had… Read More