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October 14, 2015

TOPIC: Featured News, Patient Stories

Liam Cruz’ Diagnostic Journey

Posted at October 10, 2015 03:02 pm by Lisa Sencen

On July 27, 2011 the Cruz family welcomed a gorgeous baby boy, Liam, to their lives. Weighing 7lbs and 19 inches long, he was born at Greenwich Hospital in Greenwich, CT and discharged with a clean bill of health.

At the age of 6 months, the family began to notice that Liam was not reaching his developmental milestones, such as… Read More

October 12, 2015

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

Raise Your Voice: Rare Disease Day 2016 is Coming

Posted at October 10, 2015 10:56 am by Jennifer Huron

Rare Disease Day Handprints Across America

Date: February 29, 2016
Global Theme: Patient Voice
Global Slogan: Join us in making the voice of rare diseases heard

By definition, each rare disease affects a small segment of the population, yet combined the 7,000 known rare diseases affect 30 million people -… Read More

October 1, 2015

TOPIC: Patient Stories

From Mother to Daughter

Posted at October 10, 2015 04:26 pm by Lisa Sencen

“Although this horrible rare disease has taken a lot of time away from normal life, my family and I are blessed for every breath, every smile, and every rainy day! We choose to get up, put our feet on the ground, and love life.”

Rhonda Avins-Powers knew from a young age that something was different about her… Read More

September 30, 2015

TOPIC: Patient Stories

Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity

Posted at September 9, 2015 11:32 am 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