CN proclaims Feb. 28 ‘Rare Disease Awareness Day’
TAHLEQUAH - On Feb. 28, the Cherokee Nation became the first tribe to proclaim a day “Rare Disease Awareness Day.”
Principal Chief Bill John Baker signed the proclamation with Deputy Chief S. Joe Crittenden; Jade Day, CN citizen and “Twist of Fate Funding” and patient engagement director; Health Services Medical Director Dr. James Stallcup; and Dr. James Baker, medical director at the Three Rivers Health Center in Muskogee, in attendance.
Also in attendance was Day’s 10-year old-son, Gaven, who has FG1 Syndrome, a rare disease that has no current research, treatment or cure. It is a rare genetic syndrome caused by one or more recessive genes located on the X chromosome causing physical anomalies and developmental delays.
There are more than 7,000 known rare diseases worldwide, and 95 percent of these diseases do not have a current treatment or cure.
One in 10 Americans suffer from rare diseases, and more than 50 percent are children. More than 50 percent of those children will die before reaching their fifth birthday.
Day urged Baker and the witnesses to encourage leaders worldwide in raising awareness of rare diseases and to expand research and improve access to treatments.
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