Rare Voices Australia in Mentone, Victoria, Australia | Community organisation

Rare Voices Australia

Locality: Mentone, Victoria, Australia

Phone: +61 497 003 104

Address: PO Box 138 3194 Mentone, VIC, Australia

Website: http://www.rarevoices.org.au

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• Non-profit organisation
• Community organisation
• Non-governmental organisation (NGO)

24.01.2022 Congratulations to RVA Partner, Immune Deficiency Foundation of Australia (IDFA), on the launch of their new website: www.idfa.org.au IDFA has designed the site to reflect their three key strategic priorities: 1. Education... 2. Advocacy 3. Awareness See more

23.01.2022 Today (5 October) is Global Progressive Familial Intrahepatic Cholestasis (PFIC) Awareness Day! RVA Partner, PFIC Advocacy and Resource Network, Inc., is asking us all to help raise awareness for ultra-rare liver disease/PFIC. Click here to learn more: https://bit.ly/2St0FeU

20.01.2022 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

18.01.2022 Today (16 November) is World Sanfilippo Awareness Day! RVA Partner, Sanfilippo Children's Foundation, is encouraging people to start a conversation with someone today and tell them about the childhood dementia, Sanfilippo Syndrome. Other ways you can show your support: ... Sharing a pic on social media Adding the Word Sanfilippo Day frame to your FB profile photo Changing your Facebook Cover photo to the World Sanfilippo Day logo Participating in the 'Hands of Hope', with hashtag #HandsOfHope and #WorldSanfilippoDay Download a number of resources here: https://bit.ly/35xi4ud

18.01.2022 21 to 25 September is Global Immune Thrombocytopenia (ITP) Awareness Week! Sport Purple for Platelets day will take place on 25 September and RVA Partner, ITP Australia, is encouraging people to wear purple and share where they are from using the ITP Awareness Week sign. Click here to download the sign and for more information about ITP Awareness Week: https://bit.ly/3cgfxXe

18.01.2022 Looking to learn about clinical trials? For many people living with a rare disease, participation in a clinical trial may be the only way to access treatment. Join this free public lecture on 24 November facilitated by The Florey Institute of Neuroscience and Mental Health. Find out more about the world of clinical trials and the work being carried out in Australia and globally. This lecture will also dispel the myths around clinical trials and help people to understand what... the processes of clinical trials are, what it means to be involved in a clinical trial and the terminology used. Click here to register: https://bit.ly/3975Drp

18.01.2022 We congratulate RVA Partner, Childhood Dementia Initiative, on the success of their launch event at Parliament House in NSW yesterday, which included the call for urgent action to end childhood dementia. RVA was pleased to be represented at the event by Dr Kaustuv Bhattacharya, a member of our Scientific and Medical Advisory Committee. Childhood Dementia Initiative is a global organisation driving research and advocacy to urgently disrupt the impact of childhood dementia on children and families across the world.

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.

15.01.2022 A reminder as we head into the weekend.

15.01.2022 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.

13.01.2022 A mid-week reminder!

12.01.2022 RVA Partner, Global Cmtc-Ovm Organisation, is hosting their global online member conference on Saturday 24 October 2020. Click here to learn more about the conference and to see the program: https://bit.ly/3hZjukj

11.01.2022 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

11.01.2022 "Doctors told us that our little girl would never understand emotions, walk, talk, or have any quality of life. "But they don’t know my daughter. She is fearless. She wants to try everything and be like every other child. Even though she’s trapped in a body that can’t do what she wants it to do, she never ever stops trying." Read more about Angelina and her family. Their story reiterates the need for investment into all types of research related to rare diseases.... Kidspot Fierce Beautiful Angelina

10.01.2022 "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

06.01.2022 While individual diseases may be rare, globally, approximately eight per cent of the population live with a rare disease. This equates to around two million Australians.

06.01.2022 RVA Partner, Australian Sickle Cell Advocacy (ASCA), is launching their sister organisation in South Australia on 26 September 2020. The virtual event will include special guest speakers, Hon Maria Vamvakinou and Hon Peter Khalil. See ASCA's flyer for more information. You can join the webinar via Zoom - the meeting ID is 944 1241 6088 and the passcode is 933453.

05.01.2022 8-15 November 2020 is National NAIDOC Week! This year’s theme is 'Always Was, Always Will Be,’ which recognises that First Nations people have occupied and cared for this continent for over 65,000 years. This week, we celebrate the wonderful history, culture and achievements of Aboriginal and Torres Strait Islander people.... Click here for a list of events taking place to mark National NAIDOC Week: https://bit.ly/3eHYazO See the National NAIDOC Facebook page for more.

05.01.2022 According to Healthdirect Australia, 30 million Medicare-eligible telehealth services have been delivered to over 10 million Australians since March this year. The National Strategic Action Plan for Rare Diseases calls for the increased utilisation of digital health, including telehealth. If you're having a telehealth consultation soon, see this guide from Healthdirect: https://bit.ly/2xFcqrV

03.01.2022 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

03.01.2022 Today, we remember the brave Australians who fought for our nation, particularly those who lost their lives doing so. We will remember them. Lest we forget.

02.01.2022 "Delays to care for people living with a rare disease can have dire consequences and result in irreversible disease progression." Nicole Millis, RVA's CEO, was pleased to contribute to the latest edition of the Consumers Health Forum of Australia e-journal, Health Voices. ... Nicole writes about protecting outcomes of Australians living with a rare disease through and beyond COVID-19. Read Nicole's article via this link: https://bit.ly/3fb72hA