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Tag: rare project

A total of 40 posts are filed under rare project
Brayden_ABCA3_-Surfactant_Deficiency-
Fighting ABCA3 Surfactant Deficiency Since Day One – Meet Brayden
My name is Amanda Havens and my son Brayden Matheu Pearson was born with a rare genetic disease.  He was born with ABCA3 surfactant… Continue Reading
spooner.family
Spooner Family Searches For Diagnosis For Daughters Rare Disease
Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising… Continue Reading
rddch
RARE Disease Lobby Day
WHEN:          February 28, 2012 WHERE:        Washington, DC WHO:           RDLA RDLA (Rare Disease Legislative Advocates)… Continue Reading
Regina.McPeak
Kylie McPeak’s Story – Living Life with an Undiagnosed Rare Disease
Our daughter Kylie was perfectly healthy until three days before her 4th birthday – April 2008. She had a sudden seizure. From that… Continue Reading
Tracy.Smith_
Nager Syndrome – Peyton’s Smiling Face Brings So Much Joy To Others
Peyton isn’t that much different than any other four year old if you ask her.  She loves to color and dance and she is a ‘Yo Gabba… Continue Reading
Team_SanFilippo_Foundation
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point,… Continue Reading
Kyle and Jackson Watkins, with Lynn Watkins and Lisa Hubbard of Sempra Energy Supporting Global Genes Project
Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project
Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project,… Continue Reading

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