Pleuropulmonary blastoma/DICER1 Registry

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Pleuropulmonary blastoma/DICER1 Registry Welcome to the International PPB/DICER1 Registry!

The Registry seeks to advance care for individuals with PPB and DICER1 related conditions through collection and shared of information and through development of new ways to find and treat these conditions The International Pleuropulmonary Blastoma (PPB)/DICER1 Registry is a resource, providing information on PPB, DICER1, and DICER1 associated conditions. Part of the Registry's objective is to encourage the collection of data to seek the cause of PPB and its possible genetic links, as well as collaborate with physicians, patients and patient families from around the world. If you or your child or family member is diagnosed with a condition associated with DICER1 or found to have a DICER1 gene variation, we would be grateful for your participation in the Registry, for it is through the contributions patients and families, that much has been learned about these rare conditions.

Genetic counselors help turn complex information into clear, compassionate guidance. For individuals and families affect...
10/14/2026

Genetic counselors help turn complex information into clear, compassionate guidance. For individuals and families affected by DICER1, they are trusted partners in understanding genetic testing, interpreting results and navigating next steps. On Genetic Counselor Awareness Day, we celebrate and thank the many genetic counselors who make a difference through education, support and patient-centered care.

This week is National Hereditary Cancer Week. Did you know that all individuals with a DICER1 variant are eligible to en...
10/01/2026

This week is National Hereditary Cancer Week. Did you know that all individuals with a DICER1 variant are eligible to enroll in the Registry? Even individuals who have never had a DICER1-related condition are eligible to participate. DICER1 only individuals, those who have never had a DICER1-related condition, help advance DICER1 research by creating a more complete picture of DICER1 penetrance (the likelihood of an individual with a DICER1 variant to develop a DICER1-related condition). We welcome anyone with a known DICER1 variant, including parents and siblings of already enrolled participants, to join the Registry. Learn more about the Registry and start your enrollment process here: https://www.ppbregistry.org/enroll/

Registry team member Brenya presented our latest research at the poster session of the 2026 AACR Breaking Barriers in th...
07/29/2026

Registry team member Brenya presented our latest research at the poster session of the 2026 AACR Breaking Barriers in the Fight Against Rare Cancers Conference, held this year in Vancouver, BC!

Fun Fact! The International PPB/DICER1 Registry is based in Minneapolis, Minnesota. Check out the view from our office w...
06/26/2026

Fun Fact! The International PPB/DICER1 Registry is based in Minneapolis, Minnesota. Check out the view from our office window!

Honoring this sweet girl's memory on her birthday with little acts of kindness in our communities. Happy birthday!
06/16/2026

Honoring this sweet girl's memory on her birthday with little acts of kindness in our communities. Happy birthday!

May is National Cancer Research Month. Our mission at the International PPB/DICER1 Registry is to improve outcomes for t...
05/20/2026

May is National Cancer Research Month. Our mission at the International PPB/DICER1 Registry is to improve outcomes for those with PPB and other DICER1-related conditions. Each research advancement in this area has been made possible by the generous sharing of clinical information and tissue and blood samples from participants. To join in this effort, learn more about enrolling in the Registry here: https://www.ppbregistry.org/accelerate-research/

The PPB/DICER1 and OTST Registries team had a great time at  ! We had the opportunity to connected with many wonderful o...
05/07/2026

The PPB/DICER1 and OTST Registries team had a great time at ! We had the opportunity to connected with many wonderful oncologists located both nationally and internationally, learned more about current research in related fields of study and more.

The event is live! Join us today over Zoom for the 2026 DICER1 Symposium & Family Meeting. If you have any questions, pl...
04/09/2026

The event is live! Join us today over Zoom for the 2026 DICER1 Symposium & Family Meeting. If you have any questions, please email [email protected].

We are just one week out from the 2026 DICER1 Symposium & Family Meeting, which will be held from 9:00am to 1:00pm CT ov...
04/02/2026

We are just one week out from the 2026 DICER1 Symposium & Family Meeting, which will be held from 9:00am to 1:00pm CT over Zoom on Thursday, April 9th. To register for the event and view the agenda, please visit our website here: https://www.ppbregistry.org/eventsandcommunications/ #

Address

Minneapolis, MN

Opening Hours

Monday 9am - 5pm
Tuesday 8am - 4:30pm
Wednesday 9am - 4:30pm
Thursday 5am - 6am
8am - 4:30pm
Friday 8am - 5pm

Telephone

+16128137121

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