The “Get Connected” Registry is a Patient-Powered registry that is housed at and managed by the Sickle Cell Disease Association of America (SCDAA). It is designed to create a new way for people with Sickle Cell Disease and trait to receive information about where to access specialty care, current treatments and therapies, advocacy initiatives, and research studies. For too long, many people with sickle cell disease have lived in silence, in the shadows, without feeling the freedom to openly speak about their condition. That has definitely changed. People are now learning to “Live Well with Sickle Cell” and are looking for ways to continue to improve their overall quality of life. People who participate in the registry may also receive or share information critical to establishing better health care, influence policy, advocate for more research and funding for those living with Sickle Cell Disease.
It’s time for a Universal Cure for sickle cell. In fact, it’s well past the time for a cure. We can help the process along by ensuring everyone in the United States including Puerto Rico, and the U.S. Virgin Islands, gets entered into the “Get Connected” Registry. For further information contact Community Health Worker, Donna Monroe, the “Get Connected” representative for Delaware at: MsDPM1013@gmail.com, contact@tovacommunityhealth.org or call TOVA at, 302-762-0200 ext. 105. Together, we can make this happen by “Getting Connected.”
Donna Monroe, MS
