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Rare Cancers Australia

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25.01.2022 A cancer diagnosis is unexpected, and a lot of the time can change our identity. Dr Emily talks about finding your joy during one of the most difficult experiences anyone will face. Read more bit.ly/2FXywtJ

25.01.2022 Approximately every 24 hours, a woman dies from a Gynaecological Cancer. #gynaecologicalawarenessmonth

25.01.2022 New Year, new you? What are you looking to focus on this year?

25.01.2022 Gynaecological cancers include Ovarian, Uterine, Cervical, Vulval, Fallopian Tube, and Vaginal Cancer. Only Cervical Cancer is detectable through population screening (Pap smear). #gynaecologicalawarenessmonth

24.01.2022 Worried about cancer screening during COVID? Dr. Emily has a few words about staying safe, and getting tested. Watch below

24.01.2022 Our community is our inspiration. #raremoments

24.01.2022 Shoot for the moon, even if you fail, you'll land among the stars Cecelia Ahern, P.S. I Love You There is a special kind of Rare Moment that exists so briefly you could miss it. That moment when you feel afraid, but you go out and do it anyway. That moment when you choose to keep going, is our #RareMoment today

24.01.2022 Palliative Care. Two words that often cause so much discomfort and fear, but what do we really know about it? Join Dr Emily and Sidekick James, as they dive into the world of Palliative Care. Listen apple.co/3jpqHvq

23.01.2022 Whether you are a patient or carer, a rare cancer diagnosis can be isolating. But you don't have to go through it alone. Our team run free support groups which can be accessed online or on the phone. Our Thymoma Support Group is on tomorrow 30 June at 1.30pm. ... If you are interested in joining us, email [email protected] or message us on our social media channels. For more information on our variety of support groups visit: http://ow.ly/ufUo50Fkxqn

23.01.2022 This March 13th, we're not just showing up at Mt Kosciuszko, we're showing off. Show your team support with our limited range of Rare Team Shirts! All proceeds from the sale of these shirts go towards helping our Rare Cancer patients. Who will you climb for? Buy yours today: www.kosichallenge.com.au/store

22.01.2022 Excuses cost lives. We can and should overcome them. Save the date - CanForum 2021 is coming this November!

22.01.2022 Announcement | As of the 1st of December Venclexta in combination with obinutuzumab will be available to eligible Australians diagnosed with Chronic Lymphocytic Leukaemia. The PBS listing will allow CLL patients who cannot be treated with standard chemotherapy-based treatments to have affordable access to this first line combination treatment. Read more: bit.ly/3fMhmgp

21.01.2022 This October we want to take a moment and highlight superhero's in our community. Kicking off the 'Our Superhero' segment is Professor Clare Scott from Walter and Eliza Hall Institute and Peter MacCallum Cancer Centre. Thank you, Clare, for your contribution to the RLC community. #oursuperheroes

21.01.2022 What was thought to be food poisoning turned out to be something much bigger. Megan is a single mum of 2 boys, and continues her search for a new treatment. Read Megan’s story and donate if you can bit.ly/2G2L0kc

21.01.2022 Our friends at CaPPRe are conducting research around the experience of living with a specific cancer, known as Chronic Lymphocytic Leukaemia (CLL). The research involves a 20-minute online survey with participants receiving a $50 e-gift voucher as a show of appreciation for completing the survey. If you are a CLL patient and would like to participate click the link to go to the survey bit.ly/3ijiZ4K

20.01.2022 You know, they say that there's nothing better than the view at the top, why don't you come see for yourself? Join the #KosiChallenge and #Climb4Rare Register: www.kosichallenge.com.au

20.01.2022 In case you missed it here is our monthly newsletter ‘Inside Rare’ take a look at our September edition bit.ly/inside-rare-september

20.01.2022 Welcome to the Rare Cancers Australia 2020 CanForum live stream event where we are officially launching the NOA Vision 20-30 report. Australia’s health system is among the best in the world. While the overall picture of cancer in Australia currently points to extended survival, these improvements are not shared amongst all cancer types and will not ensue without evolving some fundamental aspects of our health system. The rapid pace of change brought about by emerging therapeu...tics and technology is challenging our previously well-equipped system. Over 550,000 Australians will die from cancer between now and 2030 if nothing changes. However, if we plan and do the work now to maximise new science and emerging technologies, we will save lives. With input from 37 Australian expert presenters and consultation with over 500 members of the cancer community, the NOA Vision 20-30 report casts a national direction for how cancer care will evolve over the next ten years for all cancer patients - regardless of cancer type, patient geography or financial situation. NOA Vision 20-30 calls on the need for an Australian Cancer Futures Framework which puts patients at the centre of cancer care and paves the way for the provision of the latest technological advances for all cancer patients regardless of cancer type, geography or financial situation - ultimately increasing survival. The NOA Vision 20-30 report is available to download at www.rarecancers.org.au/page/140/2020-canforum

19.01.2022 Need help navigating and finding the right information about your cancer? Call us or browse our Cancer KnowledgeBase. 1800 257 600 bit.ly/rca-knowledgebase

19.01.2022 Welcome to October the month raising awareness for Breast Cancer in Australia. #raresubtypes

18.01.2022 This NAIDOC week we pay our respects the traditional owners of the lands on which we live and work. The gaps in equity of health outcomes for Aboriginal and Torres Strait Islander people continue to be devastating. Indigenous Australians have a more than 10% higher chance of being diagnosed with cancer and are approximately 40 per cent more likely to die from cancer than non-Indigenous Australians. #AlwaysWasAlwaysWillBe #NAIDOC #NAIDOC2020

17.01.2022 For those patient advocates interested in Patient Leadership in Health Systems, this 2 day virtual conference is an Asia Pacific regional flagship event. It aims to bring together patient experts and health stakeholders including researchers, nurses, health financiers, regulators, health service providers and pharmaceutical industry representatives to map out how we can all harmonise and align our agendas with national health policies and plans on Universal Health Coverage in the region. Read more or register here: https://apacpatientcongress.org/APPC/programme/

17.01.2022 Of all new cancer cases diagnosed in 2020, almost 10% of them are some type of lung cancer, which equates to over 13,000 Australians this year alone. There are numerous rare sub-types amongst that number. This #LungCancerAwarenessMonth, we want to make sure that you know, even if you're rare, you are not alone. Reach out for more information and support. For more information on on Non-Small Cell Lung Cancer: https://bit.ly/non-small-cell-lung-cancer... For more information on Small Cell Lung Cancer: https://bit.ly/small-cell-lung-cancer

16.01.2022 They say knowledge is power, but we prefer, Knowledge, is empowerment! If you’re looking for more information on your cancer, visit our Knowledgebase or give us a call on 1800 257 600 or visit: bit.ly/rca-knowledgebase

16.01.2022 | Introducing our short-form informational series, Rare Bites. For our first episode, we are covering the big topic of sex, intimacy and cancer and joining us to help cover the topic is Canteen Australia’s, Ross Jacobs. Listen to the 10 minute episode bit.ly/rarebites

15.01.2022 It's Sarcoma Awareness Month and our friends at the @Australia and New Zealand Sarcoma Association (ANZSA) have a range of exciting activities planned, kicking off with their Tea Party on Monday. Whether you're in Australia or New Zealand, this is a chance for all Sarcoma patients, survivors, carers, family and friends to get together online, have a cuppa and connect. We are also proud to partner with ANZSA to deliver a webinar on Friday 16 July at 1.30pm where we will be tal...king all things patient support. For more visit: http://ow.ly/6u5T50FmklK

15.01.2022 Your treating team takes care of your cancer and we take care of you. 1800 257 600 [email protected]

14.01.2022 We all remember being the new kid in class, but this is nothing like that. Come hang out with us next week for our Thymoma Telephone Support Group. Register your interest here rarecancers.org.au/supportgroups

14.01.2022 Information is power, and this Pancreatic Cancer Awareness Month we want to share as much as we can. Thanks to Cancer Council Victoria for this webinar, discussing ways to access support and information to help alleviate anxiety, and make it easier to deal with a pancreatic cancer diagnosis. https://youtu.be/OghPFGoTo6A

14.01.2022 There is broad consensus that patient centred care is the gold standard and a priority in cancer care delivery. But what is reality and where are the opportunities to do better? #changingcancercare

14.01.2022 Rare Cancers Australia Golf Day is coming up and it is going to be great fun! If you enjoy golf, BBQs, great causes, more golf, the beautiful vistas of the highlands, helping cancer patients, and did we mention golf? Then you are not going to want to miss out on this! Register today! Registrations close Friday 4th of December. https://bit.ly/teeup4rare

13.01.2022 #ChangingCancerCare. Introducing the Australian Cancer Futures Framework, a report outlining how and why our systems need to adapt and grow to provide better access to Australians going through their cancer journey. We are incredibly proud of this endeavour and look forward to making it become reality. Click the link to download the report bit.ly/3prBk4g #Vision2030

13.01.2022 The picturesque scenery of the alpines in the Kosciuszko National Park is certainly something you don't want to miss. Join the #KosiChallenge and #Climb4Rare Learn more here: www.kosichallenge.com.au

12.01.2022 Whilst they make up just 2.7% of all new cancer diagnoses in Australia, it is expected that 3,300 people will die of pancreatic cancer in 2020. This rapid learning resource gives a thorough overview of pancreatic cancer including signs, symptoms and treatment options. https://education.eviq.org.au/ra/topic-21-pancreatic-cancer

12.01.2022 Our fantastic new Specialist Cancer Navigator, Beth shaved her head to raise money for RCA today! We have loved welcoming Beth to the Team this year. She is a qualified social worker who gives the hugs our patients need and is a joy to work with. If you'd like to donate bit.ly/35nTuME

11.01.2022 Mesothelioma is caused by asbestos exposure, and 78% of Australian men affected had some level of occupational exposure. #mesotheliomaawaressday

10.01.2022 Aboriginal and Torres Strait Islander people were Australia’s first explorers, first navigators, first engineers, first farmers, first botanists, first scientists, first diplomats, first astronomers and first artists. #alwayswasalwayswillbe

10.01.2022 Talking about lung cancer is not the easiest thing in the world, but are we even trying the right way? Maybe we’re too wrapped up in our own experiences and thoughts, instead of adhering to the studies and data, Dr. Emily thinks. Read more below: https://bit.ly/39nQBO3

10.01.2022 This is only a glimpse of how you made the first #RareCancersAwarenessDay a success! It was amazing to see so many of you - patients, carers, families and supporters including industry voices and organisations - sharing your stories and efforts, connecting with each other and uniting for the community that you built This #WorldSocialMediaDay, view some of the highlights from Saturday in our #WeAreRare stories on our Instagram page: http://ow.ly/ghk450FltTE... Thank you for making this possible!

10.01.2022 Do you do something creative for better mental health? #themoreyouknow

10.01.2022 The 2020 CanForum launched what has been a year long collaboration with leading Australian health professionals, patient organisation, patients and industry stakeholders. This post goes out to the team behind the scenes, thank you all for such a professional and dedicated effort. All contributing to create real change #ChangingCancerCare

09.01.2022 Whether it’s telling a child that they have cancer or someone does, the thought is confronting and overwhelming. Dr Emily provides some helpful tips around sharing confusing information with children. Read more bit.ly/talking-about-cancer #childhoodcancersawarenessmonth

09.01.2022 Everyone knows the benefits, but what we want to know is how do YOU feel about exercise and cancer?

09.01.2022 Huge congratulations to the MoST Trial which has now enrolled over 3000 Australians with rare cancers. Contact us at RCA to find out whether this program is right for you. MoST is a two part research program with the aim of treating as many patients as possible with personalised therapies, now operating nationally and changing the paradigm of rare cancer care. https://bit.ly/MoST-Trial

09.01.2022 Cancer Australia has recently reported that the number of cancer diagnostic tests, procedures and referrals for suspected cancer is down 50% during the first few months of Australia’s COVID lockdown. But what does this mean? Dr looks at some of the long term effects this may have on Australian's. Read more bit.ly/3cLOMdn

09.01.2022 Most people who play golf don’t need a reason, so instead, here’s an invitation. Join us this December as we #TeeUp4Rare, to raise money in support of our work! Register: bit.ly/teeup4rare

09.01.2022 Prof. Clare Scott we are proud to be working with you in raising the tide by leveraging data and research.

08.01.2022 Hayfever, Asthma and COVID can all have similar symptoms to one another. So, how can you tell the difference between them, Dr Emily explains.

08.01.2022 Who has been your rock during your cancer experience? If you can't see your option in the image, leave a comment below.

07.01.2022 Today is International Podcast Day and what do you know, we have a podcast called Radio Rare sharing stories from our rare cancer community! Listen on our website or wherever you get your podcasts. #latenightlistening #internationalpodcastday Website: bit.ly/radio-rare Apple: apple.co/3bIoxCQ Spotify: spoti.fi/3dDaeBs

06.01.2022 Cancer recurrence is hard for anyone, especially for a mother of two young children, but what do you do when your medication is $20,000 dollars per dose? Read Claire’s story and donate if you can bit.ly/3cwafXz

06.01.2022 Promising news from the UK and The Netherlands Researchers have uncovered the origins of seven types of kidney cancer, including several rare subtypes. Each cancer type was also found to exhibit unique "cellular signals" that could be used to classify them in future.... Read more: bit.ly/3qBdmoh

06.01.2022 Our wonderful volunteers, donating their precious time to help us in the push to get to Kosi this year ... have you ordered your very own RARE t-shirt? Order here: www.kosichallenge.com.au Thank you Jan and Barb

06.01.2022 Save the date! We are assembling a compelling lineup of thought leaders from around the world - watch this space for more news on CanForum 2021.

05.01.2022 Bryan’s back to talk about our Support Groups. If you would like to join us, or just find out some more information, click the link https://bit.ly/rca-support-groups

05.01.2022 2020 is the year that everything changed, and worryingly, that includes attendance at cancer screening programs. Dr Emily explains bit.ly/2HmthUS

04.01.2022 When people think of rare cancers, they assume that because they're rare, there mustn't be many of them. They are wrong. #themoreyouknow

03.01.2022 Communication is king, but that doesn't mean it's easy, and people diagnosed with cancer know this challenge well. When talking about your cancer, how open do you like to be?

03.01.2022 Are you a carer of someone living with a rare cancer? Then we're here for you too. Join our Carer Support group tomorrow (Wednesday) and join other rare cancer carers. Let's just unwind together, register free today to get notified for each session. Register here: bit.ly/rca-support-groups Wednesday 11th November, 1:30 pm

02.01.2022 Many of you may already be familiar with Kate's story, but what you may not know is that while still living with a rare cancer, Kate has taken on the Kosi Challenge many times. Kate remembers what it's like to have no-one there, and when she climbs, she climbs for you. She climbs so that no one will be left behind. Who do you climb for? #KosiChallenge

02.01.2022 From being overwhelmed with information, to feeling like he had earned his own "mini oncology diploma", Seth describes how the experience of finding out his son had a rare cancer changed his life and perspective in our latest episode of Radio Rare. Together with his wife, our very own Dr Emily, Seth shares the family's deeply personal journey with the help of their Oncologist Dr Rachel Conyers. A word of warning, this episode explores loss and may be triggering for some liste...ners. If you feel you need to talk about any emotions or issues that come up, our team are here to support you. They can be reached on 1800 257 600 or at [email protected] Tune in for free below iTunes: apple.co/3bIoxCQ Spotify: spoti.fi/3dDaeBs Website: bit.ly/radio-rare

02.01.2022 The stigma and shame that surrounds gynaecological health is as old as time and now in 2020 it is still costing lives. Find out how 25-year Vulva Cancer survivor, Kath Mazzella, OAM, is flipping the script. Read more bit.ly/2TXkkEa #gynaecologicalawarenessmonth

02.01.2022 Sex, intimacy and cancer, an awkward topic that plays a big part during the cancer experience. We covered all of the hard questions with Canteen Australia's, Ross Jacobs. Take a listen.

01.01.2022 Clinical trials are studies to trial new medications, devices and other treatments, but there are still so many questions about how it all works and what do they mean for patients? Dr. Emily, takes a closer look into it, and explains exactly what goes on in a clinical trial. Read the article here: https://bit.ly/3fmHJJF

01.01.2022 Five year survival remains devastatingly low at just 10.7% #pancreaticawarenessmonth