DIPG Support Services

RUN DIPG is a charity dedicated to improving outcomes for patients and families. Discussing options with your doctor, nurses, and oncology team is vital to getting the best advice for you. There are numerous services linked to a range of not-for-profits that RUN DIPG collaborates. Please use the below as needed for your situation.

Online Patient Support

DIPG Navigator

The ChadTough Defeat DIPG Foundation is proud to work together with My DIPG Navigator Funding Partners to provide dedicated Nurse Navigators who offer reliable information to help families understand and manage care for their children.

DIPG Toolbox

When you or your child is diagnosed with DIPG or DMG, there are a few steps that can provide direction and help with treatment options. The good news is that you don’t have to do it alone!

Resources for Families in Australia

Cancer Hub

Cancer in the family brings immense challenges. Finding support shouldn’t be one of them. Cancer Hub is here to help families impacted by cancer more easily access the practical and emotional support they need. Get in touch and we’ll look after the rest.

Hunter Cancer Hub

The touchpoint between those impacted by cancer and those who can offer support. Located Unit 10D, Bradford Close Kotara, NSW 2289 supporting Hunter, Lake Macquarie and Central Coast families. Register prior to visiting.

Patient Support for Rare Cancers

Rare Cancers Australia Ltd (RCA) is a charity whose purpose is to improve the lives and health outcomes of Australians living with rare and less common (RLC) cancers. RCA has a number of key areas of focus: Creating a Patient Community, Advocacy, Patient Support Programs, Fundraising, Treatment & Research along with Early Diagnosis.

Travel Support for Isolated Patients

IPTAAS is the Isolated Patients Travel and Accommodation Assistance Scheme. This is a NSW Government scheme providing financial assistance towards travel and accommodation costs when a patient needs to travel long distances for treatment that is not available locally. The Isolated Patients Travel and Accommodation Assistance Scheme is a NSW Government Initiative. Please check with your local state or territory government for specific assistance for your location.

Feel the Magic Grief Support

Feel the Magic is an Australian charity providing early intervention grief education programs for kids aged 7 to 17, who are experiencing pain and isolation due to the death of a parent, guardian, or sibling. These evidence-informed programs have been developed by a clinical psychologist and are delivered by trained professionals.

Palliative Care Australia

Palliative Care Australia represents all those who work towards high quality palliative care for all Australians who need it. Working closely with consumers, their Member Organisations and the palliative care workforce, they aim to improve access to, and promote the need for, palliative care.

Resources for Families Internationally

DIPG.org

The DMG / DIPG Resource Network offers the most comprehensive source for information regarding diffuse midline glioma (DMG) and diffuse intrinsic pontine glioma(DIPG) research, treatment, and prognosis.

DIPG/DMG Registry

The registry is a central resource of clinical information about DIPG and DMG patients from across the world as well as their imaging (scans), and any available tumor samples. The registry is run by an international network of experts studying and treating DIPG and DMG.

The Brain Tumour Charity

Brain tumours are the biggest cancer killer of children and adults under 40. The Brain Tumour Charity is committed to having the biggest possible impact, for everyone affected by a brain tumour.

Resources for Families