@tayloraconroy Please check out my short bio on the APBD research foundation website {https://t.co/4mYGyZoYkS} posted mid Feb 2019 to mark International Rare Disease Day {Always the last day of Feb bc Feb 29th Only occurs onceEvery four years}:
https://t.co/Uk7pzyVKZx
@tayloraconroy Please call me bc I have a very rare disease that less than 100 people are known to still be alive Worldwide 2day & I being the Only known case throughout Hawaiʻi. 8083821284 Ronson Akina 😎🤙🏾
@TEDxHonolulu@TEDxUCLA@TEDxRosario How do I request to share my life story about living with a very rare disease that less than 100 people are living with worldwide?!
@TEDxHonolulu Aloha Pumehana iā e ka mea pili i kēia kuleana {Warm greetings to whom it may concern},
I have an extraordinary story to share about a rare genetic disease I was born with that less than 100 person's are known to still be alive with in the whole world: