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Rare Disease Day Australia

Phone: +61 497 003 104

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22.01.2022 The countdown to 2021 Rare Disease Day has started! 134 days to go.

22.01.2022 23 September is International Day of Sign Languages! To mark the day, Andrew Bannister has organised for 18 locations around Australia to light up in blue and/or green. Click here to see the full list of locations: https://bit.ly/3co0fQr Feel free to tag Rare Voices Australia into any photos you take and share online.... According to the World Federation of the Deaf, there are approximately 72 million deaf people worldwide. Collectively, they use more than 300 different sign languages. Learn more about International Day of Sign Languages: https://bit.ly/3mGRBRz

21.01.2022 Types of non-genetic rare diseases include cancers, infections as well as autoimmune disorders. Hit share to spread the message. Download the National Strategic Action Plan for Rare Diseases for more: https://bit.ly/2O4ENV6

18.01.2022 Rare Voices Australia (RVA) will be facilitating a webinar next Wednesday 23 September about the Parliamentary Inquiry into new drugs and novel medical technologies. We will be hosting two separate sessions to accommodate people's schedules as much as possible (the actual webinar content will be the same for both so you'll only need to attend one session). The options are: Session 1: 1pm to 2pm AEST... Session 2: 7:30pm to 8:30pm AEST The webinar will be facilitated by RVA's CEO, Nicole Millis, and our Stakeholder Engagement and Education Officer, Louise Healy. Each session will include: - Background information about the Inquiry - Details regarding RVA's meeting about the Inquiry with Dr. Mike Freelander MP, Co-chair of the House of Representatives Standing Committee on Health, Aged Care and Sport - Further explanation of the suite of support materials RVA has developed - Q&A session where participants can ask any questions that have not been covered throughout the session All are welcome to attend - RSVP by sending your name, organisation (if relevant) and which session you'll be attending to Louise via email: [email protected] RVA will distribute the dial-in details for the webinar to those who RSVP next week.

18.01.2022 Imagine you are a parent. No one had ever had this diagnosis before, and you have no idea what to expect. A fascinating article about rare diseases from The New York Times.

18.01.2022 Estimates may vary between countries and studies, due to differing definitions and challenges with data collection. See the National Strategic Action Plan for Rare Diseases for more: https://bit.ly/2O4ENV6

17.01.2022 Increased awareness and education about rare diseases at the individual and community level is vital. It is common for people to have never heard of the rare disease with which they, or their child, are diagnosed. The National Strategic Action Plan for Rare Diseases (the Action Plan) was launched by the Minister for Health in February 2020. Developed by the rare disease sector, for the rare disease sector, the Action Plan is the first nationally coordinated effort to address ...rare diseases in Australia and has three interrelated Pillars: Awareness and Education; Care and Support; and Research and Data. Learn more about the Awareness and Education Pillar and help to spread the message by hitting the Like and Share buttons! Through national leadership and coordination, the Action Plan can drive and future-proof much needed reform. See the National Strategic Action Plan for Rare Diseases for more: https://bit.ly/2O4ENV6

17.01.2022 2021 Rare Disease Day is only 100 days away! For those who are interested in illuminating landmarks for Rare Disease Day who missed the webinar facilitated by EURORDIS yesterday, you can watch the Facebook Live recording. A big thank you to rare disease advocate, Andrew Bannister, who attended the webinar and so generously shared his knowledge with the global rare disease community! Thank you to Andrew’s friend, Tabitha, and mum, Anne, for also joining the webinar.... RVA was pleased to present a brief presentation about this year's illuminations in Australia, which Andrew led. Be sure to watch the entire video for the Q&A session at the end. Rare Disease Day

17.01.2022 Haven't subscribed to Rare Voices Australia's (RVA) free monthly e-newsletter yet? Sign up just in time for our October 2020 e-newsletter! Receive the latest news from RVA about rare diseases and the rare disease sector, delivered straight to your inbox each month. Go to our website to subscribe for free: www.rarevoices.org.au

17.01.2022 **REMINDER** RVA will be facilitating a webinar this Wednesday 23 September about the Parliamentary Inquiry into new drugs and novel medical technologies. We will be hosting two separate sessions to accommodate people's schedules as much as possible (the actual webinar content will be the same for both so you'll only need to attend one session). The options are:... Session 1: 1pm to 2pm AEST Session 2: 7:30pm to 8:30pm AEST The webinar will be facilitated by RVA's CEO, Nicole Millis, and our Stakeholder Engagement and Education Officer, Louise Healy. Each session will include: - Background information about the Inquiry - Details regarding RVA's meeting about the Inquiry with Dr. Mike Freelander MP, Co-chair of the House of Representatives Standing Committee on Health, Aged Care and Sport - Further explanation of the suite of support materials RVA has developed - Q&A session where participants can ask any questions that have not been covered throughout the session All are welcome to attend - RSVP by sending your name, organisation (if relevant) and which session you'll be attending to Louise via email: [email protected] Please note: you must RSVP to attend.

14.01.2022 Who agrees? One of the three interrelated Pillars of the National Strategic Action Plan for Rare Diseases (the Action Plan) is Awareness and Education. Education about rare diseases needs to empower people living with a rare disease to become active participants in their rare disease journey. We understand that increased awareness and education at the individual and community level is vital.... Click through to download a copy of the Action Plan to read more: https://bit.ly/rvaactionplan

14.01.2022 This week is Nursing in the Community Week! A big thank you to all of the wonderful nurses out there who work tirelessly to save and enhance lives. This year has been an incredibly challenging period and we appreciate you all.

14.01.2022 "I figure this is my way to give back for the great care I received at the worst time in my life... Don’t get me wrong, I still have bad days and still have the odd pity party where I wish I could do things as I used to, however, life is really what you make of it." - Tim Tim lives with Guillain-Barre Syndrome, read his story: https://bit.ly/33d7cRr

12.01.2022 The countdown is on to 2021 Rare Disease Day! There are now 120 days until Rare Disease Day, which is marked on the last day of February each year. In 2020, rare disease advocate, Andrew Bannister, organised for a total of 35 landmarks to light up for Rare Disease Day. As you can see by this photo of Andrew with the Hon Matt Swinbourn MLC, which was taken at Parliament House in Perth last week, Andrew has begun advocating in the lead up to 2021 Rare Disease Day. We thank the ...Hon Matthew Swinbourn MLC for his ongoing support of the rare disease community. You can watch Mr Swinbourn speaking in Parliament about Rare Disease Day and his personal connection to rare disease in this video: https://bit.ly/2HDhBOk

12.01.2022 The House of Representatives Standing Committee on Health, Aged Care and Sport, Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies. The Inquiry will include a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need. Individuals and organisations are invited to make a submission addressing the terms of reference (TOR) by Tu...esday 13 October 2020. RVA encourages all stakeholders to make a submission. RVA will be providing leadership around this issue to our stakeholders and support to RVA Partners as part of our Mentorship and Education program. Guided by the National Strategic Action Plan for Rare Diseases, RVA has put together a suite of support materials to highlight the recommendations that have strong support for implementation in relation to the TOR of the inquiry. We have organised background information and a guide for each TOR to highlight some of the common issues for the rare disease community - this is not an exhaustive list. These guides include excerpts from the Action Plan that cover recommendations in relation to the relevant TOR. Click here to access the support materials: https://bit.ly/31qfQej

11.01.2022 "We do not know what the future holds for Angelina, however, she has a fierceness in her that is indescribable." Read Angelina's story: https://bit.ly/3fNs1Xj Fierce Beautiful Angelina

07.01.2022 This evening, Treasurer Josh Frydenberg, announced the Morrison Government’s 2020-21 Federal Budget. As the peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health’s Portfolio Briefing webinar presentation and Q&A with the Hon Greg Hunt MP (Minister for Health); Senator the Hon Richard Colbeck (Minister for Aged Care and Senior Australians, Minister for Youth and Sport); and the Hon Mark Coulton MP (Minister for Regional Health, Regional Communications and Local Government). The session was facilitated by Professor Brendan Murphy, the Secretary of the Department of Health. RVA is analysing the information in the Health Portfolio Budget ePack in greater detail and will issue a statement highlighting the areas we believe are most relevant to the rare disease sector.

05.01.2022 A mid-week reminder

04.01.2022 This has physical, psychological, emotional and financial costs for the person living with a rare disease and their family. For more information, see the National Strategic Action Plan for Rare Diseases: https://bit.ly/2O4ENV6

03.01.2022 Do you want to illuminate a building or a monument for 2021 Rare Disease Day but not sure where to start? EURORDIS is hosting a webinar about illuminating buildings for Rare Disease Day, which will include a Q&A session. In 2020, rare disease advocate, Andrew Bannister, organised for over 35 landmarks to light up for Rare Disease Day in Australia and around the world. Rare Voices Australia (RVA) and Andrew will be on the call to talk about tips and lessons learnt and t...o answer your questions. Register for the webinar: https://bit.ly/3eO1qtA