Patient Resources | Overview
We understand that you may have many questions when your child is diagnosed with sickle cell disease. We offer a variety of resources to help you and your family.
Patient education
From your child’s first visit through follow-up care, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have — How can I prevent complications or recognize them if they occur? How often will my child require follow-up? They also will reach out to you by phone, continuing the care and support you receive while at Dana-Farber/Boston Children's.
For more information on sickle cell disease and how to manage symptoms in children, read our sickle cell anemia family education packet (PDF).
Social work and mental health professionals
Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness, and dealing with financial difficulties.
Parent to parent
Want to talk with someone whose child has been treated for sickle cell disease? We can often put you in touch with other families who have been through the same experience that you and your child are facing and share their experience.
Faith-based support
If you are in need of spiritual support, we will help connect you with our Department of Spiritual Care. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian, and United Church of Christ traditions who will listen to you, pray with you, and help you observe your own faith practices during your hospital experience.
On our Patient and Family Support Services web pages, you can learn about:
- getting to Dana-Farber/Boston Children's
- accommodations
- navigating the hospital experience
- resources that are available for your family