One Kool Warrior’s Voice

Bec Tilley has a unique voice in the Koolen-de Vries Syndrome community as both a Kool Warrior herself and a mother to two very Kool children! Bec enjoys spending her time writing, but did you know she’s been published more than a dozen times? Looking for some inspiration? Peruse the following list of Bec’s writings and podcasts!

Thanks for being such an amazing advocate, Bec!

Courageous Parents Network
Rare Chromosome Disorder Day
Beacon for Rare Disease
Global Genes
Rare Revolution
Patient Worthy: Strength of Rare
Rarity Life (page 62-64)
Passing on a Rare Disease
Patient Worth: Finding Purpose
Safe Harbor Podcast
Know Rare
#Rare is Community
Once Upon a Gene Podcast
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