Virtual DICER1 Registry Symposium and Family Meeting
Tuesday, April 9, 2026 9 a.m to 1 p.m. CDT
Join us virtually for the 2025 Registry Symposium and Family Meeting to discuss DICER1 surveillance, testing, and novel approaches. All patients, families, healthcare professionals, and researchers are welcome to join.
The event is free for all patients, families, and professionals not seeking genetic counselor credits. Registration fee will be waived at checkout.
The International PPB/DICER1 Registry’s mission is to improve outcomes for children and adults with pleuropulmonary blastoma (PPB) and other DICER1-related cancers. We are affiliated with a broad collaborative network of hospitals, and will work with families and physicians on any questions related to PPB and other DICER1-related cancers free of charge. Together we can find a cure for PPB/DICER1-related cancers.
The International PPB/DICER1 Registry’s mission is to improve outcomes for children and adults with pleuropulmonary blastoma (PPB) and other DICER1-related cancers. We are affiliated with a broad collaborative network of hospitals, and will work with families and physicians on any questions related to PPB and other DICER1-related cancers free of charge. Together we can find a cure for PPB/DICER1-related cancers.
PPB is a rare lung tumor found primarily in young children.
An alteration in the DICER1 gene increases the risk of a variety of cancerous and noncancerous tumors.
Research from the Registry has shown a link between PPB and DICER1.
We have learned that nearly all PPB tumors are characterized by variation in the DICER1 gene.
Most but not all of the time, a child who has PPB also has variation in this gene.
Define optimal therapy for PPB, Sertoli-Leydig cell tumor and other DICER1-related cancers
Validate testing and surveillance guidelines for children and adults with germline DICER1 variations
Develop new ways to diagnose and follow children with DICER1-related cancers
Discover new therapies for DICER1-related cancers
In addition to giving families and caregivers as much information as possible, it is critical that we continue to collect information on PPB, DICER1 and associated conditions. We ask all families and physicians who use our information to allow us to collect data on every child with PPB, DICER1 and the related conditions.
We ask for your help – please enroll with the Registry. After enrolling we will reach out with resources and information to help support you throughout your child’s or patient’s journey.