We invite you to join our mission to build international dataset and raise awareness about these rare diseases – Rare Embryonal Tumors of the CNS International Registry

Rare Embryonal Tumors of the CNS International Registry posted on LinkedIn:

“It’s been a year since the establishment of the International Registry of Rare Embryonal Tumors of CNS by the Immune Oncology Research Institute. Our mission remains steadfast: to build a huge international dataset and raise awareness about these rare diseases, fostering collaboration among institutions globally.

Over the past 12 months, more than 10 institutions from diverse continents have joined our mission. Together, we’re actively collecting information on rare embryonal tumors, including ETMR, FOXR2-activated CNS neuroblastoma, cribriform neuroepithelial tumor, CNS tumor with BCOR internal tandem duplication, and more.

Why does it matter? Consolidating this data is crucial for advancing research and gaining a deeper understanding of these rare diseases. The collective efforts will contribute significantly to the quest for improved treatment options.

If you have patients diagnosed with any of these conditions, we invite you to join our mission. Your participation is invaluable in expanding our knowledge base and making a meaningful impact. Together, let’s pave the way for progress in the field of rare embryonal tumors.

For more information, please, visit here.”

Source: Rare Embryonal Tumors of the CNS International Registry/LinkedIn