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
- 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
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:
For media enquiries, please contact:
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
- 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