World observes Rare Diseases Day

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This week, the world observes Rare Diseases Day, focusing on creating awareness and advocating for the acknowledgment and equal representation of communities affected by rare diseases in mainstream healthcare facilities.

The significance of this awareness initiative is highlighted by the recent 3rd Biennial Rare Diseases Conference held in Johannesburg.

The conference served as a platform for the exchange of ideas and scientific insights, underscoring the importance of incorporating the experiences of patients, caregivers, and support groups in addressing rare diseases.

Monique Nel, Medical Advisor at the global healthcare and pharmaceutical company SANOFI, emphasised the increasing prevalence of rare diseases worldwide.

“So rare diseases would be celebrated on the 29th of February. On this day, it really is about raising awareness and understanding of what rare conditions really are, for example, someone may have heard of it and which is spinal muscular atrophy. It’s a genetic disorder, and another good example is cystic fibrosis; it primarily affects the respiratory and digestive system.”

The podcast below has more on Rare Diseases Day: