Jamela from Florida

Copy of Rare Life - Jamela IG (1)

Jamela is a patient advocate and Registered Nurse, in South Florida. She was born in Brooklyn, New York where she was diagnosed with Homocystinuria through the Newborn Screening program. Since her diagnosis, she has been fortunate to have the support of her family and team of healthcare providers. The dedication of her family and admiration of her healthcare providers have made a significant impact on the trajectory of her life. Inspired by her community of care, Jamela hopes to be that type of advocate for others. She understands that patients can live optimally with the right type of resources and interventions. Jamela is excited to use her experiences as a patient and provider to bring awareness about the complexities of rare diseases and help create resources for the community. Living with a rare disease is not easy, but she hopes her story can bring hope to families facing similar challenges. Jamela currently serves on HCU Network America's Classical HCU Steering Committee and is a patient advocate with the Rare Disease Legislative Advocates (RDLA) through the EveryLife Foundation.