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BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240522T190000
DTEND;TZID=Australia/Melbourne:20240522T200000
DTSTAMP:20240514T011729Z
CREATED:20240514T003707Z
LAST-MODIFIED:20240514T011729Z
UID:10000063-1716404400-1716408000@idfa.org.au
SUMMARY:Gene Therapy and SCID
DESCRIPTION:Gene Therapy and SCID\nInvitation to join the SCID Advocacy Group Meeting with special guest speaker Dr Lorna Mc Leman providing an update on a current Gene Therapy study.\nThe SCID advocacy group has been meeting regularly since 2021 to move forward SCID advocacy across all states and territories. \nThis month\, we are inviting all SCID families to attend this meeting as we will be joined by – Dr Lorna Mc Leman\, Research Fellow\, Murdoch Children’s Research Institute\, Melbourne. Lorna will be outlining a current consumer study about Gene Therapies. We were fortunate enough to hear some of these insights at the recent National conference we held in March\, and are looking forward to the next updates. The meeting will also provide an opportunity for IDFA members to be involved in the study as either participants or as Consumer Advisors so please come along to hear about this unique opportunity to be involved in research. \n\nMeeting Agenda \n\nWelcome and Apologies\nPrevious Meeting Actions\n\nCampaign timeline\nList of families and campaign supporters\nChildren’s Book – Carer Survey\n\n\nGuest Speaker – Dr Lorna Mc Leman\nState/Territories Campaign Update\nSCID Connect Support Group\n\nUpdate\nMeeting Facilitator\n\n\nAchievement of National SCID NBS\n\nIDFA media and other activities\n\n\nOther Business\n\nCampaign Update – Access to SCIg Treatment\n\n\nNext Meeting
URL:https://idfa.org.au/event/gene-therapy-and-scid/
LOCATION:Online via Zoom\, Australia
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2024/05/Member-Meet-Up-Event-Banners-websiteemails-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240418T190000
DTEND;TZID=Australia/Melbourne:20240418T200000
DTSTAMP:20240320T222058Z
CREATED:20240320T222058Z
LAST-MODIFIED:20240320T222058Z
UID:10000056-1713466800-1713470400@idfa.org.au
SUMMARY:Immunodeficiency Insights: Ask IDFA
DESCRIPTION:This webinar will focus on learning more about the IDFA Medical Advisory Committee (MAC)\, Health Professionals Advisory Panel (HPAP) and National Patient Advisory Panel (NPAP) and how you can post your questions to inform upcoming appointments and self-management. \nYou can also post your questions to members of the Medical Advisory Committee to be answered during the webinar.\nMembers will also be asking common member questions to showcase the full range of topics you can Ask IDFA! Join us! \nIDFA Advisory Panel Speaker Geraldine Dunne \nExpert Presenters (Members of MAC): Dr Melanie Wong Dr Luke Droney \nIDFA Member Panel: Briana Corry Adam Friederich
URL:https://idfa.org.au/event/immunodeficiency-insights-ask-idfa/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2024/03/Webinar-ZoomWebsite-Banner-2024-2.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240321T190000
DTEND;TZID=Australia/Melbourne:20240321T200000
DTSTAMP:20240226T225358Z
CREATED:20240226T225323Z
LAST-MODIFIED:20240226T225358Z
UID:10000016-1711047600-1711051200@idfa.org.au
SUMMARY:Immunodeficiency Insights: Update: Gut Health and Immunodeficiencies
DESCRIPTION:Many members experience challenges managing their gut health. This may include managing gut disorders\, food intolerances\, microflora imbalances with medication use\, and managing nutrition. This webinar will provide an update on approaches to managing gut health conditions and ways to support a healthy gut microbiome and immune health through nutrition. Professor Jason Tye-Din and Dietitian Chiara Miglioretto are invited to share their insights and answer your gut health questions. \nExpert Presenters:\nAssoc. Professor Dr Jason Tye-Din – Gastroenterologist/Researcher\nChiara Miglioretto (Gut Friendly Dietitians) – Dietitian \nIDFA Member Insights:\nKelly Lambert – Carer of Child with PI and Dietitian
URL:https://idfa.org.au/event/immunodeficiency-insights-update-gut-health-and-immunodeficiencies/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240316T130000
DTEND;TZID=Australia/Melbourne:20240317T130000
DTSTAMP:20240201T222848Z
CREATED:20240201T015635Z
LAST-MODIFIED:20240201T222848Z
UID:10000014-1710594000-1710680400@idfa.org.au
SUMMARY:IDFA National Conference 2024
DESCRIPTION:Join us on Saturday 16 and Sunday 17 March 2024 for the IDFA Annual Conference in Sydney. \nThis is a fantastic opportunity for IDFA members to unite\, relish each other’s company\, and dive into engaging discussions led by IDFA\, health professionals\, and fellow members on exciting and relevant topics. \nEvent Timings \n\nSaturday 1-5pm – Conference\nSaturday 6pm – Conference Dinner\nSunday 9am-1pm – Conference\n\nConference Costs\nIDFA will cover the cost of Conference Registration\, accommodation\, meals and parking for all members. There is also a generous member subsidy available to ensure that our members are not out of pocket for any associated travel costs. \nTo RSVP please contact us at 📩 info@idfa.org.au or 1800 100 198.
URL:https://idfa.org.au/event/idfa-national-conference-2024/
LOCATION:Rydges Sydney Airport\, 8 Arrival Ct\, Mascot\, NSW\, 2020\, Australia
CATEGORIES:Member Meet-up
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2024/02/Website-Event-Banners-2024.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240229T190000
DTEND;TZID=Australia/Melbourne:20240229T200000
DTSTAMP:20240129T214647Z
CREATED:20240129T214647Z
LAST-MODIFIED:20240129T214647Z
UID:10000013-1709233200-1709236800@idfa.org.au
SUMMARY:Immunodeficiency Insights: Voices of IDFA Resource Launch
DESCRIPTION:Rare Disease Day aims to maintain a strong focus on Rare Diseases like Primary Immunodeficiencies in research and advocacy. \nThis webinar will bring together Rare Voices Australia and key researchers from the Rare Disease Sector to highlight the continued need for a focus on Rare Diseases through collaboration and innovation to benefit communities living with immunodeficiencies. \nThis webinar will also have a special focus on the role of member stories \nKeynote Speakers\nCarolyn Dews – IDFA – CEO\nEstela Gimenez – IDFA – Programs Coordinator \nIDFA Member Insights:\nLouise Grant\nKylie Downie
URL:https://idfa.org.au/event/immunodeficiency-insights-voices-of-idfa-resource-launch/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2024/01/Webinar-ZoomWebsite-Banner-2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240210T100000
DTEND;TZID=Australia/Melbourne:20240210T130000
DTSTAMP:20240115T214340Z
CREATED:20240115T214340Z
LAST-MODIFIED:20240115T214340Z
UID:10000012-1707559200-1707570000@idfa.org.au
SUMMARY:Brisbane Member Meeting
DESCRIPTION:You Are Invited To… \nLeisurely Brunch On The Waterfront \nIDFA is delighted to invite you to a special gathering on the idyllic shores of the Brisbane River\, where the beauty of the outdoors meets the warmth of community. \n“Blossoming Together” \nBlossoming Together symbolises the growth\, resilience and vibrancy of our community. \nEvent Highlights \n\nMeet and Greet – Start your morning by mingling with fellow members who share your journey. Exchange stories\, support & laughter in the tranquil surroundings of the botanical gardens.\nSpeakers – Be empowered by valuable information provided by an IDFA representative\, healthcare professionals and our own members’ insights.\nDelectable Brunch – Enjoy a delicious brunch with tea/coffee and a choice of menu options. Savour flavours while enjoying garden views!\nNetworking – Forge new connections with members who understand the challenges and victories of living with immunodeficiency. Together\, we are stronger.\n\nRSVP via email info@idfa.org.au or phone 1800 100 198
URL:https://idfa.org.au/event/brisbane-member-meeting/
LOCATION:Mary Mae’s Bar & Kitchen\, Brisbane Powerhouse\, 119 Lamington St\, New Farm\, QLD\, 4005\, Australia
CATEGORIES:Member Meet-up
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2024/01/Website-Banner-Events.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240201T190000
DTEND;TZID=Australia/Melbourne:20240201T200000
DTSTAMP:20240115T213531Z
CREATED:20231214T041438Z
LAST-MODIFIED:20240115T213531Z
UID:10000011-1706814000-1706817600@idfa.org.au
SUMMARY:Immunodeficiency Insights: Update: COVID-19 Variants and Vaccinations
DESCRIPTION:Learn more about the COVID-19 booster vaccination program\, variants\, and the latest research on COVID-19 among the Australian population and available treatments. With the roll out of the COVID-19 booster program we know that many members have been learning to navigate the changing landscape of variants and navigating living with an immunodeficiency post pandemic. \nThe webinar will feature health professionals and member insights. \nKeynote Presenter:\nDr Katrina Randall \nIDFA Member Insights:\nBarbara O’Neill \nExpert Speaker:\nDr Emily Edwards
URL:https://idfa.org.au/event/immunodeficiency-insights-update-covid-19-variants-and-vaccinations/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/12/Webinar-ZoomWebsite-Banner-2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20231212T190000
DTEND;TZID=Australia/Melbourne:20231212T200000
DTSTAMP:20231114T003249Z
CREATED:20231114T003249Z
LAST-MODIFIED:20231114T003249Z
UID:10000010-1702407600-1702411200@idfa.org.au
SUMMARY:December PI Education Webinar: NDIS and Primary Immunodeficiencies
DESCRIPTION:Many members facing significant challenges living with\, or caring for a person with\, a Primary Immunodeficiency\, have found the NDIS process very challenging. \nMandy Drain\, an NDIS Coordinator will outline; how the insurance program works\, key application steps and areas of impairment when living with an immunodeficiency to inform your application and sources of evidence. \nKeynote Speakers \n\nMandy Drain – Taylor Made Outcomes
URL:https://idfa.org.au/event/december-pi-education-webinar-ndis-and-primary-immunodeficiencies/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/11/Webinar-ZoomWebsite-Banner-2.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20231209T090000
DTEND;TZID=Australia/Melbourne:20231209T120000
DTSTAMP:20240115T213611Z
CREATED:20231024T020329Z
LAST-MODIFIED:20240115T213611Z
UID:10000009-1702112400-1702123200@idfa.org.au
SUMMARY:Canberra Member Meeting
DESCRIPTION:You Are Invited To… \nLeisurely Brunch at the Botanical Gardens \nIDFA is delighted to invite you to a special gathering in the heart of nature\, where the beauty of the outdoors meets the warmth of community. \n“Blossoming Together” \nBlossoming Together symbolises the growth\, resilience and vibrancy of our community. \nEvent Highlights \n\nMeet and Greet – Start your morning by mingling with fellow members who share your journey. Exchange stories\, support & laughter in the tranquil surroundings of the botanical gardens.\nSpeakers – Be empowered by valuable information provided by an IDFA representative\, healthcare professionals and our own members’ insights.\nDelectable Brunch – Enjoy a delicious brunch with tea/coffee and a choice of menu options. Savour flavours while enjoying garden views!\nNetworking – Forge new connections with members who understand the challenges and victories of living with immunodeficiency. Together\, we are stronger.\n\nRSVP via email info@idfa.org.au or phone 1800 100 198
URL:https://idfa.org.au/event/canberra-member-meeting/
LOCATION:Crosbie Morrison Building Australian National Botanic Gardens\, Tourist Drive 2\, Clunies Ross St\,\, Acton\, ACT\, 2601\, Australia
CATEGORIES:Member Meet-up
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/10/Website-Banner-Events-1.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20231202T100000
DTEND;TZID=Australia/Melbourne:20231202T130000
DTSTAMP:20231024T015956Z
CREATED:20231024T015441Z
LAST-MODIFIED:20231024T015956Z
UID:10000008-1701511200-1701522000@idfa.org.au
SUMMARY:Melbourne Member Meeting
DESCRIPTION:You Are Invited To… \nLeisurely Brunch at the Botanical Gardens \nIDFA is delighted to invite you to a special gathering in the heart of nature\, where the beauty of the outdoors meets the warmth of community. \n“Blossoming Together” \nBlossoming Together symbolises the growth\, resilience and vibrancy of our community. \nEvent Highlights \n\nMeet and Greet – Start your morning by mingling with fellow members who share your journey. Exchange stories\, support & laughter in the tranquil surroundings of the botanical gardens.\nSpeakers – Be empowered by valuable information provided by an IDFA representative\, healthcare professionals and our own members’ insights.\nDelectable Brunch – Enjoy a delicious brunch with tea/coffee and a choice of menu options. Savour flavours while enjoying garden views!\nNetworking – Forge new connections with members who understand the challenges and victories of living with immunodeficiency. Together\, we are stronger.\n\nRSVP via email info@idfa.org.au or phone 1800 100 198
URL:https://idfa.org.au/event/6956/
LOCATION:The Terrace Café Melbourne Botanic Gardens By The Lake\, Corner Alexandra Avenue &\, Anderson St\,\, South Yarra\, VIC\, 3141\, Australia
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/10/Website-Banner-Events.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20231130T190000
DTEND;TZID=Australia/Melbourne:20231130T200000
DTSTAMP:20231012T041147Z
CREATED:20231012T040424Z
LAST-MODIFIED:20231012T041147Z
UID:10000007-1701370800-1701374400@idfa.org.au
SUMMARY:November PI Education Webinar: Men's Health and Primary Immunodeficiencies
DESCRIPTION:There is little information available about the impacts of Primary Immunodeficiencies (PIs) on men’s physical and mental health. \nThis webinar will focus on practical ways male members living with a PI or caring for a child with a PI\, can maintain a healthy lifestyle and mental wellbeing. \nKeynote Speakers \n\nDr Karuna Keat – Immunologist\nMitch Durbridge – Clinical Psychologist\n\nIDFA Member Insights \n\nAdam Friederich\nRichard Price\nDale Dominey-Howes
URL:https://idfa.org.au/event/november-pi-education-webinar-mens-health-primary-immunodeficiencies/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://idfa.org.au/wp-content/uploads/2023/10/Webinar-ZoomWebsite-Banner.jpg
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20231026T190000
DTEND;TZID=Australia/Melbourne:20231026T200000
DTSTAMP:20230919T021751Z
CREATED:20230919T021751Z
LAST-MODIFIED:20230919T021751Z
UID:10000006-1698346800-1698350400@idfa.org.au
SUMMARY:October PI Education Webinar: Plasma Update and Donation Advocacy
DESCRIPTION:To highlight International Plasma Awareness Week this webinar will feature an NBA update about the transition of plasma products and access to SCIg\, the plasma journey from donor to recipient managed by Lifeblood\, and tips to share your story to promote plasma donation. \nKeynote Speakers \n\nJo Cameron National Blood Authority – Director Commercial Blood Products\nSally Deveson Lifeblood ACT – Community Relations Officer\n\nIDFA Member Insights \n\nHayley Teasdale – Lifeblood Volunteer and IDFA member
URL:https://idfa.org.au/event/october-pi-education-webinar-plasma-update-and-donation-advocacy/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/09/Webinar-ZoomWebsite-Banner-1.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20230926T190000
DTEND;TZID=Australia/Melbourne:20230926T200000
DTSTAMP:20230904T222655Z
CREATED:20230904T222655Z
LAST-MODIFIED:20230904T222655Z
UID:10000005-1695754800-1695758400@idfa.org.au
SUMMARY:September PI Education Webinar:  Newborn Screening for SCID – A Brave New World
DESCRIPTION:After many years of campaigning\, the Australian government has committed to implement SCID testing into the Newborn Screening (NBS) Program across the country\, and most states and territories are already underway. This webinar provides important updates for both patient members and health professional working with parents of babies with an abnormal SCID NBS test result. \nKeynote Presenter: Dr Kahn Preece\, NSW Paediatric Immunologist \nMember Insights: Louise Grant
URL:https://idfa.org.au/event/september-pi-education-webinar-newborn-screening-for-scid-a-brave-new-world/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20230829T190000
DTEND;TZID=Australia/Melbourne:20230829T200000
DTSTAMP:20230801T061527Z
CREATED:20230713T040345Z
LAST-MODIFIED:20230801T061527Z
UID:10000004-1693335600-1693339200@idfa.org.au
SUMMARY:August PI Education Webinar: Young Adult Members Transitioning into Adult Care
DESCRIPTION:Young Adult Members Transitioning into Adult Care \n\nAre you a young adult member moving into the adult health care system?\nAre you a carer member wanting to know how to support a young adult making this transition?\n\n\nWe know that often the move into the adult care healthcare system can be particularly stressful and can cause a great deal of anxiety. You may need to start accessing different clinicians possibly in different locations and develop new relationships with less parental involvement. You may also also encounter clinicians who are not very experienced working with young people. Then there’s the expectation to be much more responsible for your treatment plan\, ask questions and self-advocate if you feel your needs are not being met. \nIn this webinar we are inviting Immunologist Dr Alisa Kane and young adult member Zoe Parry to cover some of the key changes you can expect moving into the adult healthcare system\, some common issues young people may face\, areas for self advocacy\, and tips and strategies for a smoother transition.
URL:https://idfa.org.au/event/august-pi-education-webinar-yams-transitioning-into-adult-care/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20230727T190000
DTEND;TZID=Australia/Melbourne:20230727T200000
DTSTAMP:20230626T005339Z
CREATED:20230613T024145Z
LAST-MODIFIED:20230626T005339Z
UID:10000003-1690484400-1690488000@idfa.org.au
SUMMARY:PI Education Webinar - GP Awareness of Immunodeficiencies
DESCRIPTION:Many members knew something was wrong despite their GP prescribing more antibiotics or other treatments for infection. Members self-advocated for a blood test\, or referral\, sought a second opinion or took more prescribed medications only to find their infection remained for a long time or never really went away. \nUnfortunately\, GPs can often mistake the warning signs of an immunodeficiency\, leading to complications from ongoing infection\, avoidable hospitalization and deteriorating mental well-being. \nOur next webinar is for both GPs and community members to support earlier detection in our community and promote quality of life: \n\nWhat signs can GPs look for?\nWhat can GPs do to support earlier diagnosis?\nWhat can members do to work with their GP to self-advocate and support awareness?\n\nPlease feel free to send any questions or tips to share as a patient working with your GP to IDFA at info@idfa.org.au in advance of the Webinar. Please let us know if you’re interested in briefly presenting your journey with our members.
URL:https://idfa.org.au/event/pi-education-webinar-gp-awareness-of-immunodeficiencies/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/06/Webinars-and-Event_Banners-6.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20230627T190000
DTEND;TZID=Australia/Melbourne:20230627T200000
DTSTAMP:20230605T133945Z
CREATED:20230525T041521Z
LAST-MODIFIED:20230605T133945Z
UID:10000002-1687892400-1687896000@idfa.org.au
SUMMARY:PI Education Webinar - Travel Smart with Immunodeficiency
DESCRIPTION:We know that for many members travelling can be an immense challenge. However\, some have been able to enjoy travelling safely with the right planning and support. \nOur next PI Education webinar will include members sharing their travel stories and tips\, and key need-to-know information from a travel industry advocate for people with disabilities. \nPlease let us know any questions and areas of interest to cover in the webinar such as: arranging medications\, immunoglobulin\, and SCIg consumables\, managing medical equipment\, planning an itinerary to manage fatigue\, managing pain or mobility issues\, and making suitable accommodation and travel arrangements. \nIf you would like to share any travel tips with members to stay well and get the most out of their trip – Please reach out! We would love to add your tips to our webinar or\, if interested\, you can be a presenter in the webinar! \nPlease feel free to send any questions to IDFA at info@idfa.org.au in advance of the Webinar so that we can ensure that we are able to provide you with a response.
URL:https://idfa.org.au/event/pi-education-webinar-travelsmart-with-ids/
LOCATION:Online via Zoom\, Australia
CATEGORIES:Webinar
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20230504T190000
DTEND;TZID=Australia/Melbourne:20230504T200000
DTSTAMP:20230504T042739Z
CREATED:20230413T053207Z
LAST-MODIFIED:20230504T042739Z
UID:10000001-1683226800-1683230400@idfa.org.au
SUMMARY:Use Your Voice - Self Advocacy
DESCRIPTION:To celebrate World PI Week\, IDFA has joined forces with Blue Wren Advocacy to launch the Self Advocacy Toolkit. The toolkit empowers individuals with immunodeficiencies and their families to become more effective self-advocates and better navigate the complexities of managing these rare diseases. \nGuest speakers will share their experiences with self-advocacy and discuss how the toolkit can help. The co-creator of the toolkit will also be on hand to provide insights into the creation and development of this invaluable resource. \nAttendees will have the opportunity to hear from members of the community who have either used self-advocacy techniques to improve their health outcomes and quality of life or feel that these tools will be valuable for them and others going forward. By learning from these experiences\, participants will gain a deeper understanding of how self-advocacy can positively impact their lives and those of their loved ones. \nThe Self-Advocacy Toolkit is a comprehensive resource that provides individuals with a way to take control of their healthcare journey. \nGuest Speakers include: \n\nChristine Jeffery – Vice President IPOPI\, IDFA National Patient Advisory Panel Member and CIRCA Board Member\nLouise Healy – Education and Advocacy Manager at Rare Voices Australia\nGeraldine Dunne – Clinical Nurse Consultant Immunology & Infectious Disease at Sydney Children’s Hospital Network\nIDFA Members
URL:https://idfa.org.au/event/use-your-voice-self-advocacy/
LOCATION:Online via Zoom\, Australia
ATTACH;FMTTYPE=image/png:https://idfa.org.au/wp-content/uploads/2023/04/Webinars-and-Event_Banners.png
ORGANIZER;CN="Immune Deficiencies Foundation Australia":MAILTO:info@idfa.org.au
END:VEVENT
END:VCALENDAR