Genetic Support Network of Victoria (GSNV) | Social service

Genetic Support Network of Victoria (GSNV)

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24.01.2022 GSNV August 2020 E-News - https://mailchi.mp/1a802a50e60f/gsnv-e-news-june-4544567 Another bumper issue covering our mid year review , community news , Covid-19 resources

24.01.2022 What's On at The Genetic Support Network of Victoria - https://mailchi.mp//whats-on-at-the-genetic-support-networ Catch up on our news and events for September

24.01.2022 RESEARCH AUSTRALIA are conducting a survey, asking for contributions to be compiled into a Report entitled, COVID-19 - The impact on Philanthropy in HMR (health & medical research). The report is intended for Government, the wider sector and the public as part of awareness raising of health and medical research. SURVEY CLOSES AUGUST 7th Due for completion by COB August 7th.... https://www.surveymonkey.com/r/QNT36QF

23.01.2022 Clinical Information Sharing Forum for Consumer Discussion About this Event The Department of Health and Human Services (DHHS) is proposing to introduce a Clinical Information Sharing (CIS) System. This would enable complete clinician access to patient health records across both the Victorian public hospital network and external health service providers. While there are many benefits to be derived from an integrated health data system, the new scheme will not include opt out ...provisions for consumers, nor will it require prior patient consent for those records to be shared. Additionally, consumers will not receive notification of when their data has been accessed, or for what reason. The Health Issues Centre is holding a public forum, Thursday 26th November to discuss with you the implications of mandatory Clinical Information Sharing. We warmly invite all members of the Victorian public to attend. https://www.eventbrite.com.au/e/public-forum-tickets-128558

21.01.2022 GSNV September 2020 E-News - https://mailchi.mp/31d88f1/gsnv-may-2020-e-news-url-4579587

20.01.2022 Introduction to MSAC Webinar Thu 27 August 2020 The Department of Health will be hosting an Introduction to Medical Services Advisory Committee (MSAC) Webinar on: Thursday 27 August 2020... 3-4pm AEST This webinar aims to provide basic information on the role of MSAC. Please register here: Introduction to MSAC Webinar Registration: https://kapara.rdbk.com.au/landers/67a8d0.html MSAC website: http://www.msac.gov.au HTA website: www.health.gov.au/hta Email: [email protected]

20.01.2022 An invitation to a virtual workshop for consumer organisations to discuss the Join Us national research register next Thursday, 26 November 2020 at 10:30am. Join Us is an online register that can be used to quickly and easily mobilise the Australian community to engage in health research relevant to them. The register invites adult Australians to consent to their personal information being used securely to match them to research studies, as well as their routinely collected h...ealth data being de-identified and stored long-term for health research purposes. You can find more information by visiting the Join Us website and watching this video. https://www.youtube.com/watch?v=uUDVx7oBhf4 The details for the workshop are: DATE: Thursday 26 November 2020 (next Thursday) TIME: 10.30am to 12.00pm WHERE: Zoom To register, please go here : https://georgehub.zoom.us//tJYoduioqzoiG9AiK5kim8hH5ZMQtvp

20.01.2022 What can you do? Prevention and Response to Violence against People with Disabilities SEMINAR. Today we Introduce our fourth and final panelist:SCOTT HOLMES Scott Holmes has close to 10 years’ experience in the preventing violence against women sector, most recently at Our Watch, the national prevention foundation. His areas of particular interest and activity are prevention within faith settings, and engaging men. Scott now works with the Brotherhood of St Laurence Communi...ty Agency as a member of the chaplaincy team providing workplace wellbeing, support and pastoral care to the over 2000 staff and volunteers, including a large number of Local Area Coordinators employed in the BSLs NDIS service This webinar will show how gender and disability inequality drives violence, and how you can contribute to violence prevention through your work. This webinar will benefit genetic support group members, advocates, allied health professionals, parents and/or carers, students, and academics. To register for this FREE WEBINAR: Date: Thursday 3rd September 2020 Time: 10:30am12:00pm Location: online via Zoom (details will be provided upon registration) Register: by Monday 30th August 2020 via Eventbrite: https://gsnv_wdv_webinar.eventbrite.com.au For more information: contact Olivia Franklin at [email protected]

19.01.2022 What do you know about Aspberger's Syndrome ? It can often be an additional complexity in a person diagnosed with a rare condition and so today we stand with our Asperger families to raise awareness for this condition. The day aims to raise awareness about the condition, educate the general population and highlight the challenges people with Asperger’s face. Asperger's is a neurology that affects the way we communicate, and is considered to be part of the autism spectrum. Th...is difference in thinking influences the way we make sense of the world, process information, relate to other people, and cope with various situations. People with Asperger's minds have average or above average IQ, and many people with Asperger traits don’t feel ‘disabled’, just different. It is how they are treated in the world that can disable them. The day aims to raise awareness about the condition, educate the general population and highlight the challenges people with Asperger’s face. You can find local support through Asperger's Victoria https://aspergersvic.org.au/ #aspergers #aspergersyndrome #aspergers_awareness

19.01.2022 R U OK?Day is today Thursday 10 September 2020. It’s our national day of action when we remind Australians that every day is the day to ask, Are you OK? if someone in your world is struggling with life’s ups and downs. As a peak Victorian body, we acknowledge that at the moment all Victorians are doing it tough ... so just remember we are here . You can contact us for a chat face to face each week on our virtual chat room www.gotomeet.me/gsnv every Thursday morning , our office phone is still manned every day and so is our email : [email protected] Start the conversation today, there are some great resources on the R U OK? website that could assist your support group in checking in with its members https://youtu.be/erHLP29tzPE

19.01.2022 People living with rare disease often face a diagnostic odyssey, typically waiting years for a diagnosis and receiving multiple misdiagnoses along the way... Show your support by attending one of the many events taking place virtually to create awareness for this important day. The GSNV FREE event will be held via Zoom webinar on Friday 26th Feb 2021 from 9:20am -1:30pm Register via our Facebook event https://www.facebook.com/events/174027454083641/ or Eventbrite https://www.eventbrite.com.au/e/137368728565

18.01.2022 What can you do? Prevention and Response to Violence against People with Disabilities SEMINAR. This webinar will show how gender and disability inequality drives violence, and how you can contribute to violence prevention through your work. This webinar will benefit genetic support group members, advocates, allied health professionals, parents and/or carers, students, and academics. Introducing the panelists: NICOLE LEE - Nicole is a fierce advocate for disability rights and... the prevention of family violence. She provided evidence at the Royal Commission into Family Violence, has been working as a member of the Victims Survivors Advisory Council for the past 3 years, and appeared on You Can’t Ask That in 2018. To register for this FREE webinar Date: Thursday 3rd September 2020 Time: 10:30am12:00pm Location: online via Zoom (details will be provided upon registration) Register: by Monday 30th August 2020 via Eventbrite: https://gsnv_wdv_webinar.eventbrite.com.au For more information: contact Olivia Franklin at [email protected] #womenwithdisabilitiesvictoria

18.01.2022 April is Limb Loss and Limb Difference Awareness Month Supporting @limbs4life and Limbkids Support Association

18.01.2022 Join the SWAN Meet the Expert Series tonight from 8:30pm- 9:30pm. Topic: Protecting vulnerable beneficiaries To register :https://www.eventbrite.com.au/e/115965041561

17.01.2022 THIS WEEK'S OPEN CHAT ROOM HAS BEEN CANCELLED We are running our 5 Days to Wellness Event this week and on Thursday will hold an NDIS seminar to answer all your questions about preparing for your application and the planning meeting . There are still places to join us so head to our registration page https://www.gsnv.org.au/5-days-of-wellness-week/ to sign up before Thursday

17.01.2022 Tomorrow's virtual open chat is focusing on getting your input into our Strategic Plan Topic #3 Integrated care and Diagnostics _ please join us GOTOMEET.ME/GSNV from 10:30m -12pm Discussion will address the following questions:... * What is changing in the world in the theme area? * How will those changes impact our community? * What would we like to change? * What are the barriers currently to creating that change? * Where is the greatest opportunity for positive change? * What is the role of support groups now and in the future? * What is the GSNV role in this area: Leading, Influencing, Engaging, Monitoring * Who should GSNV be engaged with? Below are some links and documents to provide some background and thinking material but please be assured the most important thing we need is your brains and thoughts. Reading is not compulsory! Reference Documents attached or linked include: National Strategic Action Plan for Rare Diseases https://www.health.gov.au//national-strategic-action-plan- Victorian Charter of Human Rights and Responsibilities https://www.humanrights.vic.gov.au//Resource-Responsibilit Australian Charter of Healthcare Rights https://www.safetyandquality.gov.au//Charter%20of%20Health UN Sustainable Development Goals https://www.un.org/sustainabledevelopment/health/ https://www.un.org/sustainabledevelopment/inequality/ Rare2030 Horizon Scanning Emerging Trends Knowledge Base Summary - Integrated, social and holistic care for rare diseases Knowledge Base Summary Rare Disease Diagnostics Social Prescribing Round Table November 2019

17.01.2022 Getting ready for our GSNV 5 Days to Wellness Right to Safety Seminar today Lets change the Story: and be part of the movement to prevent violence against women and their children in australia

16.01.2022 Join Genetic and Rare Disease Network, Syndromes Without A Name - SWAN Australia, Genetic Alliance Australia, Genetic Support Network of Victoria (GSNV) to find out what they are doing for Rare Disease Day this year.

15.01.2022 Medical Services Advisory Committee (MSAC) Guidelines Review Consumer Briefing Webinar Thursday 10th Sept 11am- 12pm AEST The Department of Health is hosting an Introduction to Medical Services Advisory Committee (MSAC) Webinar on:... Thursday 27 August 2020 @ 3-4pm AEST This webinar aims to provide basic information on the role of MSAC Guidelines (Therapeutic Guidelines and Investigative Guidelines for Preparing Assessment Reports for MSAC), and associated Assessment Report templates, provide practical information on how to present evidence to MSAC and its Sub-Committees. Principal role of MSAC To advise the Australian Minister for Health on evidence relating to the safety, effectiveness and cost-effectiveness of new medical technologies and procedures. This advice informs Australian Government decisions about public funding for new, and in some cases existing, medical procedures. Background to the establishment of the MSAC MSAC was established in 1998 to improve health outcomes for patients by ensuring that new and existing medical procedures attracting funding under the Medicare Benefits Schedule are supported by evidence of their safety, clinical effectiveness and cost-effectiveness. To register : https://kapara.rdbk.com.au/landers/065a8b.html MSAC website: http://www.msac.gov.au HTA website: www.health.gov.au/hta Email: [email protected] The Medical Services Advisory Committee (MSAC) is an independent committee that was established by the Minister for Health in 1998. The committee comprises individuals with expertise in clinical medicine, health economics and consumer matters. MSAC evaluates medical services, health technologies and health programs proposed for public funding to advise the Minister for Health on whether a medical service, health technology or program should be publicly funded, and the circumstances in which it should be funded. Supported by the Evaluation (ESC) and the PICO Advisory (PASC) Sub-committees, MSAC assesses applications based on comparative safety, clinical effectiveness and cost effectiveness and financial impact using best available evidence. The Guidelines promote processes to ensure Australians have access to safe, clinically effective and cost effective medical services, health technologies and health programs. As part of the public consultation process for the MSAC Guidelines Review, consumers and consumers groups are invited to comment on the draft revised MSAC Guidelines (Draft Guidelines).

14.01.2022 This Thursday 3rd Sept, we will be attending the webinar "What can you do? Prevention to violence against people with disabilities seminar from 10:30 am instead of our open chatroom session. We will see you all back here next week and hope you can make it to the webinar as well YOU can still register via Eventbrite or the QR code Eventbrite:https://gsnv_wdv_webinar.eventbrite.com.au... Eventbrite:https://gsnv_wdv_webinar.eventbrite.com.au See more

14.01.2022 SEEKING EXPRESSIONS OF INTEREST: Our mental health is important. Staying mentally fit ensures we are all part of the foundation for stronger and more resilient families and communities. Living with genetic, undiagnosed and rare conditions can place enormous stress on every aspect of life. ... As part of our Care for Rare Initiative, the GSNV is establishing a MENTAL HEALTH WORKING GROUP to develop a mental health strategy and plan for our community . The group will include support group leaders, health consumers and genetic and mental health professionals. We will convene early in 2021 to commence the development of the strategy. We are seeking expressions of interest from genetic health consumers and support group leaders. We’d love to hear from you. You can contact us with any queries or questions or simply send in your EOI to : [email protected] #mentalhealthawareness #raredisease #community support #health #mentalhealthmatters #wellness #mindfulness #covid #healing See more

14.01.2022 Rare Disease Day 2021. The GSNV event will be held virtually on Friday Feb 26th from 9:30am - 1:30 pm This year the GSNV presents a series of conversations lead by our CEO Monica Ferrie and focuses on strengthening the capacity of the genetic, undiagnosed and rare disease communities (GUARD) to establish their 'team' for support, advocacy and awareness. ... The GSNV is charged with building and supporting a strong sector and support network for all people living with rare undiagnosed and genetic conditions and all those who support them. There is so much going on behind the scenes at the GSNV tune in on Rare Disease Day to find out more Join us for this important event as we discuss how we are building our team to support you to build yours Register at https://www.eventbrite.com.au/e/137368728565 or our Facebook page https://www.facebook.com/Genetic.Support/ #rareadvocacy #rare360 #rarecollaborators #ourlivesmatter #adultslivingrare #rareInsights #inclusion #rarediseaseday #showyourstripes #careaboutrare #Raremamas #raredisease #rarediseaseawareness #rarediseaseparenting #geneticdisease

12.01.2022 Attend our Rare Disease Day event on Friday 26th Feb . Register at https://www.eventbrite.com.au/e/137368728565 or our facebook page https://www.facebook.com/Genetic.Support/ #rareadvocacy #rare360 #rarecollaborators #ourlivesmatter #adultslivingrare #rareInsights #inclusion #rarediseaseday #showyourstripes #careaboutrare #Raremamas #raredisease #rarediseaseawareness #rarediseaseparenting #geneticdisease

12.01.2022 Opening up our Strategic Conversations into this weeks virtual Open Chat on Thursday 24th Sept 10:30am -12pm Strategic Conversation #3 : Integrated Care and Diagnostics Please join us : More information can be found on Supporting the Supporters FB Page

12.01.2022 Open to support groups and individuals wanting to increase their awareness, advocacy and research connections, the GSNV is holding a workshop event on April 27th which you can attend virtually. Be mentored by community leaders on your specific needs to build your perfect team- REGISTER NOW https://www.eventbrite.com.au/manage/events/146536058295 #rareadvocacy #rare360 #rarecollaborators #ourlivesmatter #adultslivingrare #rareInsights #inclusion #careaboutrare #Raremamas #raredisease #rarediseaseawareness #rarediseaseparenting #geneticdisease #teamwork #communitymentors

11.01.2022 Reminder of webinar tomorrow : Thursday 27th Aug 3pm - 4pm The Department of Health is hosting an Introduction to Medical Services Advisory Committee (MSAC) Webinar on: Thursday 27 August 2020 @ 3-4pm AEST This webinar aims to provide basic information on the role of MSAC. ... Principal role of MSAC To advise the Australian Minister for Health on evidence relating to the safety, effectiveness and cost-effectiveness of new medical technologies and procedures. This advice informs Australian Government decisions about public funding for new, and in some cases existing, medical procedures. Background to the establishment of the MSAC MSAC was established in 1998 to improve health outcomes for patients by ensuring that new and existing medical procedures attracting funding under the Medicare Benefits Schedule are supported by evidence of their safety, clinical effectiveness and cost-effectiveness. To register : https://kapara.rdbk.com.au/landers/67a8d0.html MSAC website: http://www.msac.gov.au HTA website: www.health.gov.au/hta Email: [email protected] The Medical Services Advisory Committee (MSAC) is an independent committee that was established by the Minister for Health in 1998. The committee comprises individuals with expertise in clinical medicine, health economics and consumer matters. MSAC evaluates medical services, health technologies and health programs proposed for public funding to advise the Minister for Health on whether a medical service, health technology or program should be publically funded, and the circumstances in which it should be funded. Supported by the Evaluation (ESC) and the PICO Advisory (PASC) Sub-committees, MSAC assesses applications based on comparative safety, clinical effectiveness and cost effectiveness and financial impact using best available evidence. This webinar is intended to help educate and inform of the role of MSAC. The MSAC Guidelines provide practical information on how to present evidence to the MSAC and its subcommittees. The Guidelines is being reviewed and this foundational webinar will support future webinars relating to the MSAC Guidelines review.

09.01.2022 The Autism Explained Online Summit is a FREE week-long online event, featuring 20+ sessions from highly respected experts from all over the world. Each day will focus on a different theme, ranging from understanding autism, family life, transitions and strategies, through to creating a supportive environment. TO REGISTER: https://autism-explained.teachable.com/p/2020-online-summit

09.01.2022 You're Invited: Special Videocast on Thursday 13 August with Commissioner Ro Allen presented by Carers Victoria . The conversation will be hosted by Sue Peden, President of the Carers Victoria Board. Sue and Commissioner Allen will be discussing Carers Victoria’s journey towards Rainbow Tick accreditation, what meaningful inclusion means for LGBTI carers and how services can be more inclusive for members of the LGBTI communities. They will also discuss Carers Victoria’s submission to the Victorian Government’s Whole of Government LGBTIQ Strategy. In this submission, Carers Victoria made a number of recommendations to the Victorian Government to ensure the provision of inclusive and accessible services for carers from LGBTIQ communities. Access the live session on Carers Victoria FB page or the Zoom link :https://zoom.us/j/99622135610

09.01.2022 2020 Review of the Disability Standards for Education 2005- CLOSES SEPT 25, 2020 The Australian Government is calling for public submissions into a review of the Disability Standards for Education 2005. The standards are reviewed every five years. For more information, visit the Consultation Hub at www.disabilitystandardsreview.education.gov.au. People can have their say by completing an online questionnaire, making a submission, participating in a webinar, or by expressing their interest in a focus group, one-on-one interview, or an online discussion. Consultations close: 25 September 2020

09.01.2022 Hosted by the Precision Health CoP, this Digital Health Live event brings together a range of speakers who will explore how the digital disruption caused by COVID-19 has been successfully used to enhance equity of access to care. When: Thursday 20 August 2020 12:30 - 1:30pm (AEST)... Where: Zoom Link to be provided the day before the event Contact: Belinda Yasar: [email protected] Phone: 03 9326 3311 Register here: https://members.digitalhealth.org.au/eve/EventDetails.aspx

08.01.2022 Join us this morning for a virtual community conversation on RESEARCH & ENGAGEMENT as part of the series of topics underlying our next GSNV Strategic Plan. Jump on the GOTOMEET.ME/GSNV link from 10:30-12pm TODAY to share your thoughts & perspective on this subject with us

05.01.2022 In case the video link in the previous post doesn't work for you here is the link ; https://youtu.be/E4e_WR6YnYA

04.01.2022 What can you do? Prevention and Response to Violence against People with Disabilities SEMINAR. Today we Introduce our second panelist: HEATHER RENTON :Heather is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother of two children, a son aged 17 and a daughter aged 14 years. Heather’s daughter was diagno...sed with a rare genetic condition, FOXP1 syndrome at the age of 9 after being misdiagnosed twice. Heather is a consumer health representative on a number of different advisory groups and is a passionate health and disability advocate. This webinar will show how gender and disability inequality drives violence, and how you can contribute to violence prevention through your work. This webinar will benefit genetic support group members, advocates, allied health professionals, parents and/or carers, students, and academics. To register for this FREE WEBINAR: Date: Thursday 3rd September 2020 Time: 10:30am12:00pm Location: online via Zoom (details will be provided upon registration) Register: by Monday 30th August 2020 via Eventbrite: https://gsnv_wdv_webinar.eventbrite.com.au For more information: contact Olivia Franklin at [email protected]

01.01.2022 https://www.surveymonkey.com/r/LXZMJ2S Can you take a few moments to help us hear you views on our Strategic Plan topics. Our first topic was ACCESS TO HEALTHCARE, TREATMENT AND MEDICAL DEVICES . ... Please take part in this 3 question survey and help us make a difference See more