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December 23, 2014

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

Life is a Special Occasion

Posted at December 12, 2014 06:08 am by Lisa Sencen

Alena Galan is a happy 16-year old girl full of life and wise beyond her years. She can light up a room with her quick-witted charm and energetic personality. She loves to sing, dance, play guitar and violin, and like most teenagers, enjoys spending time with friends. Alena has a deep-rooted appreciation of life and cherishes every moment –… 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

December 1, 2014

TOPIC: Featured News, Industry, Patients & Members

NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases

Posted at December 12, 2014 05:52 pm by Mary Dunkle

 

The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.

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