By Oluthando Keteyi - 28 February 2019Views : 2329
Media personality and businesswoman, Roxy Burger, wears many hats on any given day, juggling her family life and her rigorous schedule while still finding the time to raise social consciousness for causes close to her heart.
Burger’s one-year-old daughter, Adrienne, was born without a thyroid gland and diagnosed with a rare condition, Congenital Hypothyroidism.
The thyroid hormone is essential for brain development in infancy and normal growth in childhood and adolescence. Early identification through newborn screening coupled with prompt life-changing treatment which costs R37 per month, has ensured that Adrienne is now perfectly healthy.
Rare Diseases South Africa (RDSA) reached out to Burger and recently announced that she has been selected as the official Rare Disease Day 2019 ambassador.
While Burger’s personal journey is common to the millions of people with rare diseases, as well as their families and caregivers, Burger will draw on her personal experience to create further awareness of rare diseases among the broader community, with a focus on the importance of newborn screening
“Roxy is very well placed to be the Rare Disease Day 2019 ambassador. She is familiar with the struggles people living with a rare disease and their families face every day,” said CEO and founder of RDSA Kelly du Plessis.
RDSA is a registered NPO born out of necessity when Du Plessis’s oldest child was diagnosed with Pompe disease at 11-months-old.
Rare Diseases Day supports those impacted by rare diseases and advocates for access to life-saving treatment and supportive care for the improved quality of life of rare disease patients.
About Rare Disease Day 2019
Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to support the path towards health care, ensuring those impacted by rare disorders are not marginalised and receive appropriate and timely access to diagnosis and treatment.