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Sickle Cell Awareness Month ribbon Sickle Cell Awareness Month ribbon

NICHQ Celebrates

Sickle Cell Awareness Month

September 2013

NICHQ is joining with organizations around the country to celebrate National Sickle Cell Awareness Month in September 2013. We invite you to explore our resources, stories, videos and other materials related to improving care for sickle cell disease, as well as celebration activities our project teams have planned for this month.

“In the United States, SCD testing is now largely part of existing newborn screening programs, so babies who have SCD are referred to appropriate medical resources. Previously, the first three years of life used to have the highest mortality in SCD. Now in the United States, we don’t see many deaths in the first three years, which is a real triumph for newborn screening and the care that follows. However, there is still a lot of work to be done in parent education and carrier screening, both in the United States and abroad.”

- Kwaku Ohene-Frempong, MD
President, Sickle Cell Foundation of Ghana

Follow us on Twitter (#SickleCellMonth #SickleCellAwarenessMonth), Facebook, Storify and Pinterest for more sickle cell news updates.

While mortality rates have decreased for patients with sickle cell disease, many still struggle with debilitating pain and barriers in the healthcare system. NICHQ is one of the national organizations working with healthcare providers and health facilities to improve sickle cell care, from screening, treatment, emergency room visits, education, primary care and the transition to adult care. Read more below and at our national improvement project page: Working to Improve Sickle Cell Healthcare (WISCH).

Jump To:

> Making a Difference
> Videos from Our Partners
> Celebration Activities

Making a Difference

Find videos, stories and interviews on how sickle cell care is improving below:

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Improving Care for People with Sickle Cell Disease

Video Summary: Providers throughout the country discuss strategies for overcoming obstacles of sickle cell disease. Through NICHQ's Working to Improve Sickle Cell Healthcare (WISCH) project, teams are using quality improvement methods to address these changes.

From Our Partners

CRISIS: Experiences of People with Sickle Cell Disease Seeking Health Care for Pain [Maryland]

Video Summary: This video from Johns Hopkins Medicine features interviews with real patients about the pain they frequently experience as a result of sickle cell disease. [Source]

Sickle Cell Disease and Primary Care [Maryland]

Video Summary: This video from Improving Health Outcomes and Medical Education for Sickle Cell Disease Network (iHOMES) describes the important role primary care plays in managing sickle cell disease. [Source]

Moving On Up to Adult Hematology [Missouri]

Video Summary: This video is intended to help teens and young adults transition from pediatric hematology care at St. Louis Children's Hospital to the adult clinic located at the Center for Advanced Medicine. [Source]

Sickle Cell Trait Awareness [Tennessee]

Video Summary: This video provides basic information on sickle cell trait. It is not intended to replace genetic counseling by trained professionals. The video was produced using funds provided by HRSA Grant 5 H46-07-001. [Source]

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Celebration Activities

Healthcare centers and institutes participating in NICHQ’s WISCH program are celebrating National Sickle Cell Awareness Month as well. Read below for a sampling of events to join or get inspiration for creating your own. Feel free to share your activities.

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The Improvement Quotient - A NICHQ Blog

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