Listen to this SCID Compass Lunch & Learn featuring Donald Kohn, MD as he discusses gene therapy for SCID. This lunch and learn was presented on March 10, 2021. For more information about SCID Compass, please visit our website: www.scidcompass.org.
You are here
Receiving advice or support after diagnosis of a genetic condition can be overwhelming for families. One resource for information about the condition and for counseling related to living with the uncertainties and the concern about your child is genetic counseling. Genetic counselors work alongside your medical team to advise individuals and families affected by genetic disorders like Severe Combined Immunodeficiency, or SCID. Listen as Barbara Biesecker, Ph.D. shares her expertise in genetic counseling.
Finding out your child has SCID is scary, but with the right information and support, your journey with SCID can be manageable. In this video, learn how newborn screening is essential to SCID diagnosis and isolation keeps a baby safe from life-threatening infection.
Listen to the SCID Compass Lunch & Learn as we discuss telehealth, or virtual healthcare 101. This lunch and learn was presented on February 3, 2021. For more information about SCID Compass, please visit our website: www.scidcompass.org.
Families, with guidance from doctors, must choose the best treatment option for their baby with SCID. The standard treatment is bone marrow transplant, but some forms of SCID can be treated with gene therapy in clinical trials or enzyme replacement therapy. This video explains how the treatments work so that parents can make an informed decision.
Severe Combined Immunodeficiency, or SCID, is a life-threatening primary immunodeficiency, typically diagnosed at birth. Early detection is critical for these children, as is the prevention of infection and early treatment. With early treatment, most children with SCID should be able to develop their own working immune system. While most families tend to focus on the best course of treatment, such as hematopoietic stem cell transplantation or gene therapy, long-term care or follow-up is necessary to maintain a healthy life.
Listen to the SCID Compass Lunch & Learn as we discuss the basics of newborn screening. This lunch and learn was presented on December 16, 2020. For more information about SCID Compass, please visit our website: www.scidcompass.org.
Bone marrow transplant is often the best treatment for a child with severe combined immunodeficiency or SCID. It’s important for families to gain an understanding of the transplant process. This video outlines questions families should ask doctors, describes how a donor is chosen, and provides an overview of transplant day.
Listen to the SCID Compass Lunch & Learn as we discuss the Primary Immunodeficiency Treatment Consortium or PIDTC. This lunch and learn was presented on November 18, 2020. For more information about SCID Compass, please visit our website: www.scidcompass.org.
IDF's National Summit session, "Bone Marrow Transplantation and Gene Therapy: Now and the Future" was presented by Jennifer Puck, MD on November 8, 2020.