PNOC PATIENT FAMILY PORTAL
Watch one of the world's leading pediatric brain tumor experts and PNOC leader Dr. Sabine Mueller share her best practices for newly diagnosed patient families.
THE PNOC DIFFERENCE
When a family first hears that their child has a brain tumor, their whole world is changed. Fast, complex decisions must be made while they are still shocked by an unimaginable diagnosis. "Unfortunately for a lot of pediatric brain tumor diagnoses, there is no standard of care,” says Dr. Sabine Mueller from the University of California San Francisco, where she leads PNOC.
Traditional brain cancer protocols do not mandate tissue samples. It is important to understand the specific biology of a child's tumor so that ineffective treatments and their serious adverse side effects can be avoided. PNOC clinical trials investigate promising new treatment strategies based on precision medicine and immunotherapy, because we understand that each tumor is as unique as each child. To learn more about PNOC clinical trials and whether they may be an option for your child visit pnoc.us/clinical-trials
PNOC RESEARCH GROUPS
There are many different types of pediatric brain tumors. PNOC has dedicated disease specific research groups comprised of the world's leading experts. PNOC has dedicated research groups for: Low grade Glioma, Diffuse Midline Glioma / High Grade Glioma including DIPG , Medulloblastoma, Atypical Teratoid Rhabdoid Tumors (ATRT), Craniopharyngioma, Ependymoma, Germ Cell Tumors, Immunotherapy as well as Imaging, and DEI (Diversity, Equity, and Inclusion).
We collaborated with PNOC experts on a series of disease specific informational webinars for patient families, to share the latest research and clinical trial updates.
PATIENT FAMILY RESOURCE LIST
We reached out to patient families and asked them to share resources that helped them during their child’s brain cancer journey. These resources are personalized and practical – they have been used by families with a similar experience who want to share a resource that provided information, counseling, a tool to help cope or a means to comfort their child.
Click to access the patient family resource list PDF
PATIENT FAMILY STORYTELLING & FUNDRAISING
Many families find sharing their story to help raise awareness and research funding empowering. If you are interested in sharing your family's pediatric brain cancer journey, or would like a customized fundraising page, please email rachael@pnocfoundation.org
Read the Grady Family's story
CAMPAIGN LAUNCH: THE AT/RT REGISTRY, THE FIRST STEP TOWARDS AT/RT BREAKTHROUGHS
The PNOC AT/RT Working Group is committed to changing the course of history for children diagnosed with AT/RT through data driven discovery. The AT/RT Registry is an essential step towards treatment breakthroughs. Start a fundraiser to support the AT/RT Registry today!
PNOC has treated over 900 children with cutting edge treatments.
30 clinical trials opened since PNOC's inception in 2013