The International PPB/DICER1 Registry

[The International PPB/DICER1 Registry @ppbdicer1]

November is lung cancer awareness month. Pleuropulmonary blastoma (PPB) is the most common form of pediatric lung cancer. Variants in the DICER1 gene have been linked to this rare diagnosis. To learn more about PPB, visit us at https://t.co/JSB2GvoROj #RareCancerResearch

[The International PPB/DICER1 Registry @ppbdicer1]

Connecting with a genetic counselor can be a great step in understanding your testing needs, test results, and learning more about what a DICER1 diagnosis means for you and your family. We are grateful for the amazing genetic counselors we connect with! #GeneticCounselorAwareness

[The International PPB/DICER1 Registry @ppbdicer1]

Since the inception of The Registry, more than 1,200 children and adults have enrolled in The Registry from 49 U.S. states, 61 countries, and six inhabited continents. We would like to send a huge shout out to our participants and their families! #rarecancerresearch

[The International PPB/DICER1 Registry @ppbdicer1]

Our PPB/DICER1/OTST Patient/Parent Advisory Group is expanding! We hope that this will build community and advance research and care. Indicate your interest and availability by completing the Doodle: https://t.co/5jPltQuAuU

[The International PPB/DICER1 Registry @ppbdicer1]

Last call to register to join the International PPB/DICER1/OTST Registries 2024 Family Meeting! Register to join virtually here: https://t.co/YRJVsNOQhs

[The International PPB/DICER1 Registry @ppbdicer1]

The International PPB/DICER1/OTST Registries 2024 Family Meeting is only 2 weeks away! Please register now and if you plan to join in person, please RSVP by Monday, July 22nd.

Meeting Registration: https://t.co/YRJVsNOirU

Meet-&-Greet RSVP: https://t.co/pKelTCppht

[The International PPB/DICER1 Registry @ppbdicer1]

We have some great presentations lined up for this year's International PPB/DICER1/OTST Registries Family Meeting. Check out the image below for a sneak peek! #KnowledgeIsPower #RareCancerResearch

[The International PPB/DICER1 Registry @ppbdicer1]

Registration is open for the International PPB/DICER1/OTST Registries 2024 Family Meeting. This event is hybrid, and we look forward to you joining in-person or virtually via Zoom to hear more about PPB, DICER1 and OTST research! Register here: https://t.co/YRJVsNOirU

[The International PPB/DICER1 Registry @ppbdicer1]

We recently analyzed a cohort of 191 participants with Sertoli-Leydig cell tumors and gynandroblastomas. We sought to describe prognostic factors, treatment, and outcomes for these individuals. Read more about our findings here: https://t.co/kq3rEX42zp

[The International PPB/DICER1 Registry @ppbdicer1]

Save the date! The 2024 International PPB/DICER1/OTST Registries Family Meeting will be held on Thursday, August 1, 2024 starting at 9:00am central time. Please keep an eye out for more information on how to register in the upcoming weeks. We look forward to connecting with you!

[The International PPB/DICER1 Registry @ppbdicer1]

Today we celebrate National Cancer Survivor’s Day while also holding a spot in our hearts for those who lost their courageously fought battles. Together we can find a cure and improve outcomes for those with PPB, SLCT and other DICER1-related cancers. #NCSD2024

[The International PPB/DICER1 Registry @ppbdicer1]

How common are lung cysts in adolescents and adults with DICER1 germline variants? Learn more about the prevalence of these lung cysts in this cohort here: https://t.co/IJxyjx4nDg

[The International PPB/DICER1 Registry @ppbdicer1]

Last week, we hosted our DICER1 Scientific Symposium bringing together nearly 200 clinicians, researchers, patient advocates and others determined to advance outcomes for individuals with DICER1-related cancers. What a great way to get to spend #NationalCancerResearchMonth

[The International PPB/DICER1 Registry @ppbdicer1]

Thank you to #AACR24 for inviting us to share DICER1 Registry research. We highlighted new data suggesting that pelvic surveillance should begin earlier than age 8 for girls and women with DICER1. Please join us for the DICER1 Scientific Symposium on May 16 to hear more!

[AACR @AACR]

The AACR Pediatric Cancer Working Group Town Hall Meeting, moderated by Steering Committee Chair E. Alejandro Sweet-Cordero, featured three presentations on "Updates in Pediatric Cancer Predisposition."
#AACR24 @ASweetcordero

[The International PPB/DICER1 Registry @ppbdicer1]

Stay tuned for updates on how we are creating a space to bring researchers, clinicians, genetic counselors, and other healthcare professionals together to discuss the latest updates in DICER1-related research. #NationalCancerResearchMonth

[The International PPB/DICER1 Registry @ppbdicer1]

May is #BrainCancerAwarenessMonth. Some forms of brain cancer have been found to be DICER1-associated conditions. To learn more about DICER1-associated forms of brain cancer, visit https://t.co/0f0WSeCNXX. #CancerResearch

[The International PPB/DICER1 Registry @ppbdicer1]

We invite you to join us in-person or virtually for the 2024 International PPB/DICER1/OTST Registries Family Meeting on Thursday, August 1st. Registration for this event is now open. https://t.co/LoHWnnusde

[The International PPB/DICER1 Registry @ppbdicer1]

Did you receive a copy of our PPB/DICER1/OTST Registries Newsletter? It was filled with recent research advancements and upcoming opportunities to connect! If you did not receive a copy but would like to, please email us at [email protected] #rarecancerresearch

[The International PPB/DICER1 Registry @ppbdicer1]

Thank you to all of the amazing providers whose intentional care and dedication go into supporting patients and families with rare cancers, and a special thank you to our Registry physicians, Dr. Yoav Messinger and Dr. Kris Ann Schultz! #CancerResearch #EveryJourneyMatters

[The International PPB/DICER1 Registry @ppbdicer1]

March is both Social Work Month and Child Life Month! We want to extend a huge thank you and share our appreciation for the incredible work these Child Life and Social Work professionals do for patients and families every day. #SocialWorkMonth #ChildLifeMonth