SICKLE CELL DISEASE ASSOCIATION OF AMERICA PHILA-DE VALLEY CHAPTER

Sickle Cell Disease (SCD) is a global disease. It is most most common in West and Central Africa where as many as 25% of the people have sickle cell trait and 1-2% of all babies are born with a form of the disease. In the United State with an estimated population of over 270 million, about 1,000 babies are born with sickle cell disease each year. In addition people of Hispanic, Native American, Caribbean, Asian, Mediterranean, Italian/Sicilian, Greek, Indian and Turkish ancestry are also affected.

SCD is an inherited blood disorder, characterized primarily by chronic anemia and periodic episodes of pain. The underlying problem involves hemoglobin, a component of the red cells. The hemoglobin molecules in each red blood cell carry oxygen from the lungs to the body organs and tissues and bring carbon dioxide back to the lungs. Sometimes these red blood cells become sickle-shaped (crescent shaped) which causes them to stack up and create blockages that deprive the organs and tissue of oxygen carrying blood. This process not only produces episodes of pain, it can ultimately damage the tissues and vital organs and lead to a number of other serious medical problems.

Help To Raise Awareness!
The Sickle Cell "Get Connected" Registry Makes It Easy 

Get Connected is the 1st national patient-powered registry for those with sickle cell disease and sickle cell trait. This registry is free and follows all HIPPA and Confidentiality laws. Among the key benefits of the registry: It will help to provide a more accurate number of individuals living with sickle cell disease and sickle cell trait.  Most importantly, by gathering the true number of individuals living with this illness we will be able to lobby for more funds for research, psychosocial services, new medical care/medications and ultimately a cure. 

If you are a patient, click to sign up for Get Connected. Please remember to select SCDAA/PDVC as your local CBO Affilliate.  Parents, guardians and caregivers, use the link to sign up the person in your care as patient and you can also register as a non-patient.

To learn more about Get Connected, please take a few minutes to view the video below. 

 Events & News 

  • Sickle Cell Disease Association of America/PDVC's 34th Anniversary - July 2, 2016.
  • September - Annual Sickle Cell Awareness Month
  • 19th Annual Walter E Brandon Sickle Cell 5K Walk/Run
    Saturday, September 24, 2016
  • SCDAA 44th Annual Convention, Baltimore, MD
    September 27 - October 1st, 2016 

 

 

Play Sickle Cell Disease National Patient Powered Registry