We are excited to invite you to the newly launched “Get Connected.” It is the Sickle Cell Disease Association of America’s (SCDAA) National Patient Powered Registry. There is power in numbers and we want the St. Louis Metropolitan sickle cell community to be well represented. Your input through “Get Connected” will help us to identify critical needs. But more importantly, your voice can inform and support vital research and lead to the development of much needed care improvement guidelines.
The www.GetConnectedscd.org registry is FREE and confidential. Once you register with your basic contact information, you will receive a verification email link that allows you to go back into the registry to complete your profile. You can choose to connect with your local SCDAA agency; for example, the (St. Louis) Sickle Cell Association. The Sickle Cell Association will give priority for resources and programs to those who have completed profiles in the Get Connected Registry.