Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 04

Oklahoma Family Network is thankful to have you join us today for the final release in this series and conversation with Charles, to help us celebrate what makes Charles III unique as we celebrate Rare Day today!!!

 

You will hear Charles brag on his daughter Zion and speak to the sibling relationship that Zion has with her little brother, Charles III. He also discussed tips he has for those in the community on engaging him and Charles III in conversation when you see them out and about.  And last, but certainly not least, we wrap up our great conversation with Charles putting the disability label away and tells us about his incredible son and his big personality!

 

Charles has big goals and dreams; and wants others to know about SibShops through SoonerSuccess.

 

Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.

 

With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.

 

Rare disease statistics to share with others:

• While each disease may be rare, collectively, they impact a large number of people.

• 300 million people worldwide live with a rare disease.

• There are over 6000 different rare diseases.

• 72% of rare diseases are genetic.

• 70% of these rare genetic diseases begin in childhood.

 

#CdLS #ShareYourColors #Rare #LittleLighthouse #SoonerSuccess #SibShops