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We Saved You a Seat
Oklahoma Family Network
100 episodes
9 months ago
Oklahoma Family Network focuses on supporting families of children and youth with special needs via emotional support, resource navigation, and ensuring quality healthcare for all children and families through strong and effective family/professional partnerships.
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Parenting
Kids & Family,
Health & Fitness,
Mental Health
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All content for We Saved You a Seat is the property of Oklahoma Family Network and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Oklahoma Family Network focuses on supporting families of children and youth with special needs via emotional support, resource navigation, and ensuring quality healthcare for all children and families through strong and effective family/professional partnerships.
Show more...
Parenting
Kids & Family,
Health & Fitness,
Mental Health
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Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 02
We Saved You a Seat
33 minutes 29 seconds
1 year ago
Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 02
Thank you for joining us for episode 2 (of 4) with Charles Moore as we discuss some of the most impactful people in his life as he began the advocacy journey on behalf of his son, Charles III.   Today's episode highlights his quest to learn as much as he can about Cornelia de Lange Syndrome (CdLS), and how incredibly helpful the cdlsusa.org website and organization has been in that search for knowledge and obtaining advocacy tips.   Charles also shares with us the role Little Light House in Tulsa, OK had on him as a parent to a young child with special health care needs.   Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.   With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.   Rare disease statistics to share with others: While each disease may be rare, collectively, they impact a large number of people. 300 million people worldwide live with a rare disease. There are over 6000 different rare diseases. 72% of rare diseases are genetic. 70% of these rare genetic diseases begin in childhood.   #Rare #CdLS #Syndrome #Fatherhood #LittleLightHouse 
We Saved You a Seat
Oklahoma Family Network focuses on supporting families of children and youth with special needs via emotional support, resource navigation, and ensuring quality healthcare for all children and families through strong and effective family/professional partnerships.