“Our Mission is to promote awareness of the genetic causes and health effects of sickle cell anemia and related conditions, and to provide leadership aimed at improving the quality of life for people who suffer from this terrible but treatable disease.”
–Pastor Marcia L. Taylor, Director,
Sickle Cell Anemia Foundation of Oregon
What is Sickle Cell Disease?
Sickle Cell Disease (SCD) is an inherited blood disorder that affects over 100,000 Americans — and millions worldwide. SCD is often identified with the African Americans, but it also frequents people of South Asian, Middle Eastern, Hispanic, and Mediterranean descent. According to the CDC, approximately 1% of children with SDC will die within the first 3 years of life — often from stroke and without warning. Some two million Americans are carriers of the sickle cell gene.
The Sickle Cell Anemia Foundation of Oregon is a 501(c)(3) non-profit organization dedicated to educating vulnerable populations and to encourage testing for the presence of this painful and life-threatening, but treatable disease.
Our immediate objective is to identify all the patients and carriers of sickle cell disease living in Alaska, Idaho, Oregon, and Washington state. We are dedicated to assessing the health care needs of these patients and helping them by facilitating regular access to appropriate health care providers and services. Our Pacific Northwest outreach program aims to provide individuals with the information they need to be tested for the presence of sickle cell disease. Diagnosed patients are encouraged to sign up with the national “Get Connected” Sickle Cell Anemia registry.
What does the Sickle Cell Anemia Foundation do?
The Sickle Cell Anemia Foundation of Oregon is a non profit 501(c)(3) corporation that is dedicated to serving the needs of Sickle Cell patients across the Pacific Northwest.
The foundation helps patients with:
- Patient advocacy
- Access to support groups
- Parent education
- Genetic counseling and referrals for free diagnostic testing
- Ongoing education about SCD and about available treatments
- Limited funds for home heating during winter months
- Moral support
What is the Get Connected program?
Get Connected allows patients and carriers to receive information about:
- New treatments and therapies
- Advocacy initiatives
- How to participate in research studies
Click here to learn more about the Get Connected program.
A Child Prodigy, a Painful Disease, and a Life-Changing Treatment…