Dialog Box


Rare Cancer Support

Specific links to rare cancer support sites.

Please note: We are always on the lookout for rare cancer consumer groups. If you know of any others who may like to share their websites, please let us know and we will make contacts with them.


Rare Cancers Australia (RCA)

RCA has been established to provide support, education and government advocacy for patients with rare and less common cancers and their carers. Our goals are to provide: improved patient and carer support for patients with rare and less common cancers, improved education to health care professionals on early diagnosis, funding for research, advocacy to the Federal Government encouraging improved access to treatments for rare and less common cancers.


Rare cancer alliance

RCA's primary purpose is to disseminate information and provide support to all pediatric (childhood) and adult rare cancer patients

Specialised rare cancer sites

Specific links to specialised rare cancer sites

Please note: Rare cancers account for over 20% of all cancers. But because there is only a small number of people with each disease, information is hard to find. This list will be updated whenever news of a new support group or information site is made available. Please notify us if you have the name of a site for us to add. 


Adenoid Cystic Carcinoma Organization International

The purpose of the Adenoid Cystic Carcinoma Organization International is to create a community of ACC patients and supporters who share information and hope in an atmosphere of support, while working together to help develop a cure for ACC.

Adenoid Cystic Carcinoma Research Foundation

The Adenoid Cystic Carcinoma Research Foundation (ACCRF) supports research into adenoid cystic carcinoma that will accelerate the development of improved therapies and a cure for the disease.

Brain Tumour Alliance Australia (BTAA)

The only national Australian organisation for the people with brain tumours, their family and caregivers. BTAA provides information resources to newly diagnosed patients and their families and provides a free call 1800 number for peer support.

International Brain Tumour Alliance (IBTA)

The International Brain Tumour Alliance (IBTA) was established during in 2005. It seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.

Chronic Myeloid Leukaemia Advocates Network

The Chronic Myeloid Leukaemia Advocates Network is a global membership only 'network' for CML patient group organisers who share current medical information and practice in order that members can support their specific patient communities.

Chronic Myeloid Leukaemia Support Group

The Chronic Myeloid Leukaemia Support Group is an online patient support group to serve the unmet needs of people diagnosed with chronic myeloid leukaemia.

H.E.A.R.D. Support Group

H.E.A.R.D. Support Group and Registry for people with Hemangioendothelioma (HE), Epithelioid Hemangioendothelioma (EHE), And Related vascular Disorders.


Kidney Health Australia

Kidney Health Australia works to save and improve the lives of Australians affected by kidney cancer and kidney disease by providing education, advocacy, resources and support to those affected by a kidney cancer diagnosis.


PNET Cancer Foundation

The PNET Cancer Foundation has been established to raise money to support medical and scientific research into this rare and aggressive brain cancer that affects children and teenagers. The Foundation aims to accelerate research to find better treatments and a cure for this disease.


Sarcoma Net (US)

by George Demetri, sarcoma specialist, Director of the Center for Sarcoma and Bone Oncology at the Dana-Farber Cancer Institute.


Sarcoma Alliance

A website for guidance, education and support.


Sarcoma Foundation of America

The mission of the Sarcoma Foundation of America (SFA) is to advocate for increased research to find new and better therapies with which to treat patients with Sarcoma.


The Unicorn Foundation (Australia)

The Unicorn Foundation (New Zealand)

The Unicorn Foundation is Australia and New Zealand's only not for profit medical charity supporting patients with Neuroendocrine Cancers (NETs). The mission of the Unicorn Foundation is to assist and support patients and carers, lobby for access to new and appropriate treatments, raise awareness about NETs and support research in the area of neuroendocrine cancers.

General cancer support sites

General cancer support sites and links to lists of hospitals and institutions by location. 

Please note: Many of these sites have additional links, to specific cancer support groups, as well as information on symptoms, management and treatments. Please check them out too, as they include some very good sites, too many to list here.


Cancer Australia

Cancer Australia is a national government agency, working to reduce the impact of cancer on all Australians.


Cancer Index

A comprehensive Guide to Internet Resources for Cancer.


European Cancer Patient Coalition (ECPC)

The European Cancer Patient Coalition (ECPC) is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers.


Top Cancer Hospitals (US)

As ranked by US News and World Report.


The U.S. News: Best Cancer Hospitals

Rankings cover 170 hospitals.


National Cancer Institute (US)


National Organization for Rare Disorders (NORD)

Includes a list of information of over 1100 rare diseases.


ICRDOD - RareDis

Information center for rare diseases and orphan drugs (European).


The National Cancer Intelligence Network (UK)

The National Cancer Intelligence Network is a UK site, which lists cancer registries, clinical champions, health service researchers and a range of other interested parties.



The National Library of Medicine.

Important Notice

These links are provided as a convenience and a link does not imply BioGrid Australia/CART-WHEEL sponsorship or approval of any of these sites. BioGrid Australia/CART-WHEEL does not control the operation of these linked sites, and cannot be held responsible for breaches of privacy on these linked sites or any information, content, message or other material made available through these sites. BioGrid Australia/CART-WHEEL does not guarantee the accuracy, completeness, timeliness or correct sequencing of the information provided. Neither BioGrid Australia/CART-WHEEL, nor any of the sources of the information shall be responsible for any errors or omissions, or for the use or results obtained from the use of this information. 

Please refer to the terms and conditions of use of the BioGrid Australia/ CART-WHEEL website. When you access one of these web sites you are leaving the BioGrid Australia/CART-WHEEL website.