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

Pleuropulmonary blastoma/DICER1 Registry

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United States
Minneapolis, MN
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 enc

ourage 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.

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!

06/26/2026

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

06/16/2026

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

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/

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.

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].

04/08/2026

Join us virtually over Zoom tomorrow for the 2026 DICER1 Symposium & Family Meeting. To register for the event and view the agenda, please visit our website here: https://www.ppbregistry.org/eventsandcommunications/ #

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/ #

03/26/2026

The 2026 DICER1 Symposium & Family Meeting is quickly approaching. We look forward to gathering with you virtually over Zoom on Thursday, April 9th from 9:00am to 1:00pm CT. To register for the event and view the agenda, please visit our website here: https://www.ppbregistry.org/eventsandcommunications/ #

03/18/2026

March is Kidney Cancer Awareness Month. Did you know? Children with DICER1 variation are at elevated risk for development of cystic nephroma (CN), a benign cystic tumor of the kidney. Learn more about DICER1-related kidney tumors, their symptoms, imaging options and more: https://www.ppbregistry.org/renal-tumors/

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

Website

http://www.PPBregistry.org/

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