Arafa Said was diagnosed with sickle cell disease when she was just eight months old. For the past decade, she has devoted herself to improving the lives of her fellow Tanzanians with sickle cell disease and other chronic conditions.

Said founded the Sickle Cell Disease Patients Community of Tanzania, the first sickle cell advocacy organization in the country. She also serves as the Tanzanian representative for the East African Sickle Cell Alliance. Through these organizations, she provides social support, public advocacy, and education for people living with sickle cell disease nationwide.

“I fell in love with what I’m doing,” Arafa said, “because every morning that I go and meet with people living with sickle cell disease or caregivers, they say, ‘You have helped us. We never believed that we were going to wake up and celebrate our son’s eighth birthday— or sixteenth birthday. But with you here, we see the light that people living with sickle cell disease have a life ahead of them.’ I’m very passionate about what I’m doing because not everybody can speak for others. I have the privilege to speak for others and give hope to those who are voiceless.”

Said was one the first eight advocates to join the NCDI Poverty Network’s Voices for PEN-Plus program, which launched in September 2023.