Google
Trusted Resources: Community Center
Online groups, photo galleries and blogs
A Patient Advocate’s Take on Sickle Cell Disease: The Pain and the Promise
September is National Sickle Cell Awareness Month. First officially recognized by the federal government in 1983, National Sickle Cell Awareness Month calls attention to sickle cell disease (SCD), a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans. CIRM is funding a clinical trial focused on curing the disease with a stem cell-based gene therapy.
People with this debilitating condition face a number of barriers in getting the help they need to keep their pain under control. In addition to the difficulty of accessing medication, they often have to overcome suspicion and discrimination. Patient Advocate Nancy Rene, of Axis Advocacy wrote the following blog about the problems families with SCD face.
+myBinderRelated Content
-
My medical school lesson was tinged with racism. Did that affect how I treated a sickle cell patient years later?The young woman was curled up in a ball....
-
Raymona Lawrence, DPHDr. Raymona Lawrence serves as the Direc...
-
Unanticipated consequences identified after implementation of a pediatric emergency department (PED)-based intranasa...Background: The 2014 National Heart Lun...
-
Webinar Series: Sickle Cell Science: Path to Progress – Sickle Cell Disease Care in the Emergency Department: ...To commemorate Sickle Cell Awareness Mon...
-
Why do blood types matter? – Natalie S. Hodgehttps://www.youtube.com/watch?v=xfZhb6lm...
-
Screening for sickle cell and beta thalassaemiaSickle cell and beta thalassaemi...
-
Marina Cavazzana, MD, PhDMarina Cavazzana is a pediatrician, Prof...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
