Patient resources and support
Rare Cancers Australia Ltd (RCA)
We acknowledge the support provided by one of our Key Partners – Rare Cancers Australia.
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.
As distinct from common cancers (breast, prostate, bowel, lung and melanoma) there is very little patient support offered to rare and less common cancer patients. RCA works tirelessly to ensure that this cancer group will never be forgotten or ignored again.
At Rare Cancer’s Australia we have a team of specialist cancer navigators who are here to provide assistance and support during your journey. Please give us a call on 1800 257 600 to see how we can help
RCA has a numbers of key areas of focus:
- Creating a community
- Patient support programs
- Fundraising for RCA
- Treatment and research
Find out more about RCA
Rare Cancers Australia Patient Treatment Fund
As a Rare Cancer Patient you may be informed that a treatment has been identified as the best next step, but this treatment is going to be expensive for you and your family.
The Rare Cancers Australia Patient Treatment Fund can assist you with this. It is a crowdfunding platform set up and maintained by Rare Cancers Australia. It operates similarly to sites like GoFundMe but with some important differences.
Funds raised can be used for costs incurred due to your cancer diagnosis. This includes access to treatment, accommodation, travel, some bills, and other expenses made difficult due to not being able to work. Each patient has a website page set up which includes a high resolution landscape photo, and a short story about the patient's situation. People visit the page to make donations.
Each donation is paid directly to Rare Cancers Australia and those funds are tied to the patient for their needs. This means any donation over $2 is tax deductible as RCA is a registered Australian charity. We will promote and circulate the campaign page on our social media platforms as well as in our monthly newsletter. Please give Rare Cancers Australia a call on 1800 257 600 to talk through the Patient Treatment Fund and see if it right for you.
CART-Wheel (Centre for Analysis of Rare Tumours)
The ARC Portal is proud to support the work of CART-Wheel (Centre for Analysis of Rare Tumours).
CART-WHEEL.org is the Center for Analysis of Rare Tumors but also means...
C ollect information from as many people as possible
A nalyse the information about rare tumors
R esearch new discoveries for rare tumors
T reat rare tumors more effectively
The CART-WHEEL rare tumor database exists to address some of the barriers facing effective research into rare types of tumors, rare subtypes of common cancers and inherited rare tumor predisposition. The website (www.cart-wheel.org) is designed to collect information from people who have a rare tumor OR an inherited rare tumor predisposition.
Using the CART-WHEEL rare tumor database, people from all over the world are able to register and fill out a privacy-protected, internet-based questionnaire which covers information ranging from your tumor type and treatment received, to aspects of your family history.
Find out more about CART-Wheel
NeuroEndocrine Cancer Australia
The Australian Rare Cancer Portal is pleased to announce our new collaborative partnership with NeuroEndocrine Cancer Australia. NeuroEndocrine Cancer Australia is Australia’s only not-for profit charity that focuses on neuroendocrine tumours (NETs). NETs are a group of less common tumours that develop predominately in the gut or respiratory tract. Unfortunately these tumours are often disguised by common conditions including IBS and asthma and are difficult to diagnose.
As a patient-focused group, NeuroEndocrine Cancer Australia works with the physicians, patients and their carers to support patients, lobby for new treatments, and raise awareness about these tumours. This patient and carer support includes support groups, social media groups and peer support via telephone. NeuroEndocrine Cancer Australia also supports research through the national NET clinical registry (PLANET) and its associated research app for patients which aims to collect and share information about NET patients between physicians.
The ARC Portal is delighted to support NeuroEndocrine Cancer Australia by working with the group’s NET specialists to facilitate patient care and encourages clinicians to highlight the amazing support services that area available to NET patients through the NeuroEndocrine Cancer Australia website.
Find out more about NeuroEndocrine Cancer Australia