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/
Skill Building Workshop to Address Teen Substance Use
The Best Kept Secret about Family Support Groups with Ruth Mojica
OKC Family Fun from Toddlers-Teens with Erin E. Page, APR
CBHN Overview and 988
I Chose Blue Eyes over Red Flags with Lisa Buck
Autism: Where to Begin with Kodey Toney
Disability Etiquette with Wanda Felty and Miranda Hooper
Navigating the Storms: 5 Love Languages of Children with Lauren Alvarez
Effective Communication for Parents with Lauren Alvarez
Mindful Self-Compassion with Lauren Alvarez
Creating Resilience, LLC with Cheryl Step, MS, LPC, NCC, NCSC
Ellyn Hefner and Advocacy Part Three: Achieving a Better Life Experience (ABLE) Account and Mental Health Advocacy
Ellyn Hefner and Advocacy Part Two: ADA Celebration and School Inclusion
Ellyn Hefner and Advocacy Part One: Advocacy Adventures
Prematurity Awareness (26 Weeks): Part Two with Michelle Weaver
Prematurity Awareness (26 weeks): Part One with Michelle Weaver
Preterm Premature Rupture of Membranes (PPROM) with Samantha Beckstrom
STARGARDT: One Family’s Genetic Journey Tied to Children’s Eye Health
Jeremy Warren with Dads On Special Assignment (DOSA)
Reese and Ryleigh: Twins, 26 Weeks, Preterm Premature Rupture of Membranes (PPROM), Twinless Twin
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Dr. Laura Call of the Day
Focus on the Family Broadcast