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USEFUL LINKS

Below you will find some useful links to other organisations.

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CART-WHEEL Centre for Analysis of Rare Tumors

Effective research into rare cancers is critical to providing better treatments and outcomes for patients. You can help by sharing your experience on CART-Wheel (Centre for Analysis of Rare Tumours).

The survey on CART-Wheel allows you to record details of your cancer, your treatments and other valuable information that will help research.

Please note your privacy is protected at all times. We believe that by helping CART-Wheel to build greater knowledge and understanding of rare cancers, you can make a difference.

For more information or to participate in the survey please go to
www.cart-wheel.org

 
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Australian Genomics Health Alliance

We are pleased to announce that the Australian Genomics Health Alliance website is now live.

The site provides the latest information on our research programs and flagships, and is designed to support our partners as we implement our ambitious research program.

On the site you will also find:

  • News from Australian Genomics and a round-up of relevant news from our partners.
  • Updates on events held by Australian Genomics and our partners.
  • The latest genomics related articles and publications. 

For more information, please click here

 
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Brain Tumour Alliance Australia (BTAA)

Brain Tumour Alliance Australia (BTAA) is the only national brain tumour patient and caregiver organisation in Australia. It was established in late 2008 by a group of brain tumour patients and current and former caregivers. While welcoming the advice and input of specialists, BTAA seeks to represent the brain tumour community from the viewpoint of the patient, family and caregiver.

BTAA is concerned about all brain tumours - paediatric and adult, malignant and so-called benign, and metastatic brain tumours. In other words, all tumours of the central nervous system, which includes the spinal cord. It believes that brain tumours represent a neglected cancer, which places enormous challenges on the patient and family and requires a unique response and a much increased research effort supported by the community and governments.

For more information, please visit http://www.btaa.org.au  

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Cancer Council

Cancer Council Helpline

Phone: 13 11 20    9.00 am – 5.00 pm (Monday to Friday.)

The Cancer Council Helpline is a confidential telephone information and support service. For the cost of a local call, specialist cancer professionals can answer questions about any aspect of cancer, including:

  • How to prevent cancer
  • Questions about early detection
  • How to cope with treatment and its side effects
  • Practical support that is available to anyone affected by cancer.
 
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My Cause

Rare Cancers Australis is proud to be part of Australia's #1 online fundraising and crowdfunding platform for causes. Raise money for charities, projects or people that matter to you. It's 100 percent australian owned and completely free to sign up.

You can also create online donation gift cards for your family, friends and co workers with proceeds going to Rare Cancers Australia. For more information click here.

 
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The Cholangiocarcinoma Foundation

Founded in 2006, the Cholangiocarcinoma Foundation (CCF) has grown to become a dynamic, non-profit, global organization dedicated to finding a cure and improving the quality of life for those affected by bile duct cancer. Over 5,000 pe ople in the United States are diagnosed each year with this hard-to-detect, difficult-to-treat, fatal cancer, and incidence is sharply increasing worldwide.  With an emphasis on research, education and collaboration, the Foundation’s wide array of programs serve members of the cholangiocarcinoma community including patients and caregivers; academic, medical and research professionals; policy-makers, industry, and payers. CCF works together with all stakeholders to accelerate scientific and medical progress on an international level, expedite delivery of innovative care and treatments, increase knowledge about cholangiocarcinoma, and improve health outcomes for all patients.

To learn more about the Cholangiocarcinoma Foundation, click here.

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The Forgotten Cancers Project

The Forgotten Cancers Project has already developed a valuable data resource, with over 3626 participants completing the study questionnaires, 3728 providing saliva samples and 45 providing blood samples.

We have begun collaborating with other researchers both in Australia and overseas, including contributing data to US-based National Cancer Institute consortiums the Pancreatic Cancer Cohort Consortium and the International Lymphoma Epidemiology Consortium.

Research takes time however we hope that by better understanding the causes of less common cancers we can improve the prevention and treatment of these diseases in the future.

To find out more, please visit: www.forgottencancers.com.au

 
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European Patients Academy

Eupati (European Patients' Academy) has developed a resource to help inform people about the processes involved in the development of new medicines.

Please note the information is Europe focused, so some of the details are not the same as Australia. However, most of the information is very relevant and useful in helping people to understand how medicines and developed, regulated and reimbursed as well as the important role that consumers can play in these processes. 

For more information, please visit www.patientsacademy.eu

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The Keune Foundation

The Keune Foundation supports families (Australian citizens/permanent residents) who have a child under the age of 18 diagnosed with a life threatening illness. 

For more information and an application for financial assistance, please click here

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Leila Rose Foundation

The Leila Rose Foundation is dedicated to assisting families affected by Rare Childhood Cancer.  We offer support and guidance to families when faced with the painful reality that little may be known about the cancer affecting their child.  With possibly no known cure available, the foundation assists families to ensure that they have a complete understanding of their child’s cancer, the treatment process and available treatment options so that they feel empowered to make informed choices about  their child’s health.

Assistance offered by the Leila Rose Foundation is diverse and ranges from supporting families with the practical responsibilities associated with tackling a rare disease to seeking secondary or specialist intervention and researching global treatment efficacies  for like cancers.

The Leila Rose Foundation focuses solely on rare childhood cancers and makes the journey for families less unfamiliar.  We deem to eliminate any barriers that may exist in the search for the best possible support and treatment for their child.

For more information, please visit www.leilarosefoundation.org

 
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Leukaemia Foundation

The Leukaemia Foundation provides personalised and practical support for people affected by blood cancers and related blood disorders and their loved ones. All services are provided at no charge to patients and families and are available in metropolitan, regional and rural areas across Australia.

For more information, please visit http://www.leukaemia.org.au/


 
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Unicorn Foundation

The Unicorn Foundation is the only not for profit medical charity supporting patients suffering from Neuroendocrine (NET) Cancers.

The mission of the Unicorn Foundation is; to assist and support patients and carers, through support groups and access to networks of expertise; to lobby for access to new and appropriate investigations and treatments; to raise awareness and knowledge of neuroendocrine cancers within the medical community and general public; to encourage and support Australian research in the area of neuroendocrine cancers.

For more information, please visit http://www.unicornfoundation.org.au/