Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 02

Thank you for joining us for episode 2 (of 4) with Charles Moore as we discuss some of the most impactful people in his life as he began the advocacy journey on behalf of his son, Charles III.

 

Today's episode highlights his quest to learn as much as he can about Cornelia de Lange Syndrome (CdLS), and how incredibly helpful the cdlsusa.org website and organization has been in that search for knowledge and obtaining advocacy tips.

 

Charles also shares with us the role Little Light House in Tulsa, OK had on him as a parent to a young child with special health care needs.

 

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.

 

#Rare #CdLS #Syndrome #Fatherhood #LittleLightHouse