DIPG Navigator is a free valuable resource for families that gives parents access to one-on-one support from a DIPG/DMG experienced and knowledgeable pediatric oncology nurse navigator. The navigator will help educate, connect, and support you throughout your family’s DIPG/DMG journey. These counselors are specifically trained to offer support and guidance to families dealing with DIPG/DMG. You can get personalized guidance along every step, such as understanding the diagnosis, getting a second opinion, locating and getting connected to medical experts, having biopsy considerations, and exploring possible treatment options. You can connect with DIPG Counselors through their website
A road map created for families by families to navigate DIPG diagnosis.
DIPG-OneLink is a parent to parent pathway used to link a growing curated set of resources for families fighting DIPG Pediatric Brain Cancer. This Patient Continuum created by parents includes: nurse navigation, the DIPG National Brain Tumor Board, financial support for families and now, with this site, fully accessible patient directed entry to share clinical records, imaging, multi modal omics data and quality of life assessments throughout the journey with DIPG with researchers while also providing families a securely vaulted site for their records.
DIPG-OneLink was created in collaboration with AWS, Slalom, CBTN, xCures, Tough2gether, Mithil Prasad Foundation, MyDIPG navigator and Gift from a Child. DIPG-OneLink recently launched during BrainStorm Summit 2023.
Please see the White House Cancer Moonshot Fact sheet that highlights this initiative here.
The Hope Portal is a searchable database that strives to connect childhood cancer families to the information and vast array of support resources they need–faster than ever.
The Hope Portal provides access to a robust list of organizations around the country that provide resources and assistance to children with cancer, survivors, and their families. Families and caregivers can search the Hope Portal for organizations that provide such support as financial assistance, medical travel options, summer camps, and informational resources. The Hope Portal also lists organizations that offer special wishes or gifts for their child, or support options available for the siblings of childhood cancer patients. We continue to add organizations to the Hope Portal that provide resources to address the challenges and meet the unique needs of childhood and adolescent cancer survivors and their caregivers.