Rare Diseases South Africa (RDSA) has a vision to see a South Africa where those impacted by rare diseases and congenital disorders have access to life-saving therapies and support for an improved quality of life. One of the actions which will allow that is a validated patient registry that is confidential and secure and that is able to collect patient data electronically in a user-friendly way.
Over the last 12 months, RDSA has worked on developing an online (both website and mobile application) patient registry. At the outset, the registry was intended to allow patients to share their patient journey and learn more about their condition while informing local researchers and clinicians about rare diseases and congenital conditions. However, they have now included an electronic patient record application too.
RDSA invites you a webinar where they highlight the needs and current opportunities of the South African Rare Diseases Patient Registry. The webinar will take place on April 11th at 12:00 CET.
Webinar registration link: https://us02web.zoom.us/webinar/register/WN_wz1ASt6vT_C6sVnPWiMJYw