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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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Friday Feb 28, 2025
Friday Feb 28, 2025
Celebrating Rare Disease Day with double the podcast release today!
As we continue to celebrate and honor the day set aside to bring awareness to our incredible families with a rare diagnosis, I want to thank Sky Collins for sharing in our previous release about Oklahoma Rare. She continues on to share more about the personal diagnostic journey their family experienced as they tried to advocate and find answers for their youngest daughter, Presley.
We also thank Presley for allowing her mom to share pieces of her diagnostic journey. And anyone interested can purchase Presley's book here:
https://www.makebelievebookcompany.com/product-page/better-than-a-letter-magical-mailing-kit
#OklahomaRare #MalanSyndrome #OKRare #RareDiseaseAwareness #UltraRareDisease #EveryLifeFoundation #PartnersInPolicy #SB207 #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis
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