Sickle Cell Disease 1.1

The Emily Center at Phoenix Children's Hospital offers "Our Journey with Sickle Cell Disease," an informative resource designed to assist families of children diagnosed with Sickle Cell Disease in acquiring essential knowledge for effective at-home care.

In hospital and clinic environments, parents often encounter challenges as they navigate the complexities of medical terminology. Healthcare professionals may inadvertently assume clarity in their communication without verifying understanding from the families. The app encourages users to articulate information in their own words, reinforcing their comprehension.

The "Our Journey with Sickle Cell" app aims to:

• Promote constructive dialogue between families and healthcare teams.
• Equip parents with crucial information necessary for safely caring for their child at home.
• Provide a secure platform for parents to express uncertainties and pose questions.
• Guide families in recalling essential information to convey back to their healthcare providers, allowing for affirmation of understanding and correction of any misconceptions.
• Instill confidence in families regarding their ability to care for their child, recognize potential complications, and respond appropriately.

About The Emily Center at Phoenix Children's Hospital:

Established in 1990 and named in memory of Emily Anderson, who faced a rare form of leukemia for four years, The Emily Center was founded by her parents in response to the difficulties they encountered in obtaining clear information about her condition. The Center endeavors to ensure that families with sick children have access to accurate, understandable, and no-cost pediatric health resources in Arizona. For more information, visit www.theemilycenter.org or follow on Twitter @emilycenter.

The development of the "Our Journey with Sickle Cell Disease" mobile app has been made possible through a grant from Cox.