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First of its kind resource empowers rare cancer patients in fight of their lives

17 Jul 2018 at 12:00 AM

Rare Cancers Australia, with support from Cancer Australia, has today launched ‘KnowledgeBase’, an online resource designed to plug the dire gap in information and care for an often-neglected cancer minority community

  • This year, 52,000 Australians will be diagnosed with a rare or less common cancer.
  • Due to the rare nature of these conditions, treatment and support are hard to find, which can significantly impact patient outcomes.
  • The Rare Cancers Australia KnowledgeBase provides an interconnected collection of resources spanning a rare cancer directory, specialist hospitals with cancer centres, multi-disciplinary teams, and clinicians with special interests in rare cancers.

SYDNEY, 17 July 2018 – Rare Cancers Australia has today launched KnowledgeBase, a first-of-its-kind online resource for those living with rare or less common (RLC) cancers that connects them with the information, services, and care that could change their lives, and offer this patient group a fighting chance. 

The online platform directs RLC cancer patients to information on over 200 rare cancers, a database of cancer services, over 120 healthcare professionals, support services (including financial support) and treatment options.

“Given the low-level of information previously available to RLC cancer patients, and because of the rare nature of their condition, it is our hope that KnowledgeBase will plug an important information gap - something RLC patients have long-campaigned for as they often slip through the cracks of a system that struggles to support them,” says CEO of Rare Cancers Australia, Richard Vines.

“This new service provides free, round-the-clock digital access to critical cancer care information and services, which are designed to give rare cancer patients a fighting chance.

“Our hope is that with the KnowledgeBase we can make patients feel slightly less isolated and abandoned, particularly in circumstances where their GP and specialist clinicians are unfamiliar with the patient’s cancer. “I’ve never seen one of these before” is a not uncommon response after a rare diagnosis.”

Importantly, once the cancer type has been identified, those navigating the website are able to link to connected and relevant information sources and individuals, from health professionals with a specialist knowledge or interest in a particular cancer type, to support services offered, and many relevant treatment options.

“The value for patients is in the interconnected resources and linkages to information in a single, online location, but uniquely, clinicians will also benefit with access to see multi-disciplinary teams, specialists, treatment centres, and clinical trial information,” Mr Vines continued.

The KnowledgeBase will compliment RCA’s existing face to face and telephone patient care.

For patients, the launch of the rare cancers KnowledgeBase is welcome news. Trish Hay who is living with Leiomyosarcoma, an RLC cancer, has experienced first-hand the struggles of such a diagnosis and navigating the health system.

“When you’re diagnosed with breast cancer, a wealth of information is available to you. But when you’re diagnosed with a rare cancer and are one of only a few people in Australia with your particular condition, information is hard to come by, and so are the right specialists who can give you the best possible care,” says Ms Hay.

“It’s very scary not knowing much about your condition, the resources available and the treatment options available to you. With this new resource, RLC cancer patients like me have much of the information we require to get the best possible care right at our finger tips.”

The KnowledgeBase was launched today with the help of Professor David Goldstein, a conjoint clinical professor at the Prince of Wales Clinical school and Senior Staff Specialist in the Department of Medical Oncology at the Nelune Cancer Centre, Prince of Wales Hospital, Sydney, who called the resource an important step forward for rare cancer patients.

“For a long time, those living with RLC cancers have lacked a single information source, a point of contact from which to learn more about their many different conditions and interact with like-minded Australians, medical experts, and advocacy. This is about to change,” explained Professor Goldstein.

“The KnowledgeBase is a breakthrough resource for those living with RLC cancer, particularly for the quarter of a million patients currently living with a rare or less common cancer, and the 52,000 more who are expected to be diagnosed this year,” says Professor Goldstein.

KnowledgeBase has been launched with the support of Cancer Australia, and CEO Dr. Helen Zorbas has also welcomed the new online resource and is looking forward to seeing the program potentially expanded for all cancer patients.

“Through KnowledgeBase, people affected by rare and less common cancers will benefit from a range of useful and accessible web-based information and support on rare cancer types, and multidisciplinary teams and cancer services with expertise in rare cancers,” said Dr Helen Zorbas, CEO, Cancer Australia.

Patients can access KnowledgeBase by visiting: www.rarecancers.org.au/KnowledgeBase 


For media enquiries, please contact:

Mike Lane
E: mike@oprlife.com.au
M: 0409 666 022

About the KnowledgeBase:

  • Provides information on more than 200 cancer types, including definition, symptoms, and treatment methods.
  • Provides a national list of hospitals, treatment centres, and hospices which provide cancer care, and which is searchable by public or private as well as location.
  • Provides a list of health professionals – both individuals and teams – that provide cancer care, searchable by discipline and location.
  • Provides a list of financial service assistance, support groups, and other not-for-profit organisations per state which offer support suitable for cancer patients and their families.

About Rare Cancers Australia:

Rare Cancers Australia (RCA) is a charity whose purpose is to improve awareness, support and treatment of Australians with RLC cancers. RCA was established by Richard and Kate Vines after experiencing first-hand the challenges of a RLC cancer diagnosis and realising what little support and treatment options there was available to Australian patients. Visit www.rarecancers.org.au


Category: Rare Cancers in the News
Tags: Australia, cancer, Cancer Australia, clinicians, healthcare, hospitals, information, knowledgebase, multi-disciplinary teams, oncologists, professionals, rare cancer, reference, research, resource, Richard Vines, RLC, support, trials,