Oklahoma Rare - Celebrating Rare Disease Day with Sky Collins

2025-02-28

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 ...

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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