We have partnered with the NICHD Brain and Tissue Bank for Developmental Disorders at the University of Maryland (funded by the Eunice Kennedy Shriver National Institute for Child Health and Human Development) to ensure that families can donate tissues in the most effective way possible. Families will have the option of donating tissue from the organs that are often affected in patients with Joubert syndrome including brain, eye, kidney and liver. Growing skin cells from patients can also be very valuable for research and this is usually possible as well. Should a family want to donate tissues, they should contact the UW Joubert Research Program and the NICHD Brain and Tissue Bank as soon as possible, ideally before the affected individual passes away. Staff of the NICHD Bank can be reached 24/7 in the event that a donor has passed away.
UW Joubert Research Program
NICHD Brain and Tissue Bank for Developmental Disorders
Phone: 1-800-847-1539 or 410-706-1755