Boston Medical Center to Host Conference on Sickle Cell Disease

in Health & Medicine, News Releases, School of Medicine
April 25th, 2007

Contact: Gina M. Digravio, 617-638-8491 | gina.digravio@bmc.org

(Boston) – On Saturday, April 28th, 2007, Boston Medical Center’s (BMC) Department of Pediatrics, and Project HEALTH will host the Quality of CARE Conference, bringing together families, clinical providers, and educators of children with sickle cell disease. The conference will take place from noon to 5 p.m. at the Reggie Lewis Track and Athletic Center in Roxbury Crossing.

Project HEALTH’s STRIVE program, which operates in collaboration with the BMC Department of Pediatrics, offers one-on-one mentoring, tutoring and disease management education that enables STRIVE participants to reach their full potential in school and in life.

Low-income adolescents with sickle cell disease (SCD) – an incurable genetic blood disorder predominantly affecting African Americans and Latinos – are among Boston’s most at-risk and underserved youth. These teens face significant socioeconomic, academic and health challenges, that are compounded by being from low-income communities and often of minority status. Their long hospital stays cause frequent school absences and disrupt their peer networks, compromising their academic attainment and causing social isolation.

The aim of the Quality of CARE Conference is to bring together families, educators and healthcare providers from across the Boston-area who advocate for children with SCD. The hope is that each group attending the conference will come away with action steps they can take to improve the quality of care given to children with SCD, as well as concrete resources they can utilize to take these steps.

Pediatric hematologists and primary care physicians with expertise in treating children with SCD will be in attendance to provide the knowledge around best care practices, including established treatment regimens, proper in-school disease management and appropriate self-care. Medical, medical-legal and independent living advocates will be there to share their understanding of how to help families gain access to social, medical and educational resources such as food stamps, health insurance, tutoring and classroom accommodations like water bottles, lavatory passes and a second set of textbooks.

Parents and teens with SCD will speak on panels, sharing their stories of advocating for themselves when SCD challenges are encountered.

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