Welcome to Rare Disease Day, which is celebrated the last day of February every year. Today we want to honor all the amazing families who walk daily in the world of "rare", and take a moment to share one family's journey through birth, diagnosis, therapies, and awareness.
"Rare Disease Day is a day where people can see this and realize the hardship of fighting something you know nothing about." - Sumathy Lal
"Nothing about rare diseases is simple - not the diagnosis, not the daily care, not the long term." - Unknown
Rare Disease Day is designed to bring awareness to rare diagnoses and the journey many families face alone or quietly. Today, we hope you will hear the words from a beautiful young mom who faces the world of rare head on, as she searches for answers and understanding.
For more information on rare disease day please visit: https://www.rarediseaseday.org/
For more information on 1p36 Chromosome Deletion Syndrome please visit: http://1p36.com/
Childhood Cancer Awareness Month: Episode 08 - Tracy Whitaker (ALL) - Part Two
Childhood Cancer Awareness Month: Episode 07 - Tracy Whitaker (ALL) - Part One
Childhood Cancer Awareness Month: Episode 06 - Michelle Gamble (AML) - Part Two
Childhood Cancer Awareness Month: Episode 05 - Michelle Gamble (AML) - Part One
Childhood Cancer Awareness Month: Episode 04 - Neil Lloyd (ALL) - Part Two
Childhood Cancer Awareness Month: Episode 03 - Neil Lloyd (ALL) - Part One
Childhood Cancer Awareness Month: Episode 2 - Jared and Tammy Cox (Wilms Tumor)
Childhood Cancer Awareness Month: Episode 1 - Dr. Pokala
A Copper Penny For Your Thoughts: Episode 16
A Copper Penny For Your Thoughts: Episode 15
A Copper Penny For Your Thoughts: Episode 14
A Copper Penny For Your Thoughts: Episode 13 - Transition from What If? to What Now?
A Copper Penny For Your Thoughts: Episode 07 - Private Duty Nursing
A Copper Penny For Your Thoughts: Episode 12 - Experiencing Grief with Family
A Copper Penny For Your Thoughts: Episode 11 - Favorite Memories From Family
A Copper Penny For Your Thoughts: Episode 10 - No One In This Family Fights Alone
A Copper Penny For Your Thoughts: Episode 09 - Momma D (Part Two)
A Copper Penny For Your Thoughts: Episode 08 - Momma D (Part One)
RARE Diagnosis: Angelman Syndrome, Episode 03
RARE Diagnosis: Angelman Syndrome, Episode 02
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