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December 23, 2014

TOPIC: Advocacy, Industry, Medical, Patient Stories, Patients & Members

Saving Eliza

Posted by admin

I’m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October.   Social media, as I continue to learn more every day, is an always changing, rapidly moving, fickle and funny world.  Trends can get hot and can come and go overnight, and others go on and on (ALS).  Our journey for the… Read More

December 23, 2014

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

Life is a Special Occasion

Posted 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 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 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 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