From Janice Strydom, South Africa

This year for hae day :-) on May 16, 2025, HAE South Africa launched the first in a new series of illustrated children’s books titled “Siya’s Special Superpower”.

The story follows a young boy with a love for soccer, who learns to navigate life with HAE with resilience and pride. With our series of books, we hope to empower children and their families to embrace their uniqueness while raising awareness of HAE among our community.

The book has been positively received by families and healthcare professionals, and we are planning to translate it into additional South African languages to expand accessibility and inclusion. Siya’s story is available on our website.

Our targeted social media campaign leading up to hae day :-) expanded our digital reach, resulting in a 28% increase in engagement. Overall, our advocacy efforts in the past six months of this year have seen strengthened collaborations with other rare disease advocacy groups and academic institutions.

A number of new drug trials are now enrolling patients in S.A., offering not only hope for better symptom control and quality of life but also reflecting South Africa’s growing role in the global HAE research community.