Immune Deficiency Foundation of Australia (IDFA) in Wollongong, New South Wales | Charitable organisation

Immune Deficiency Foundation of Australia (IDFA)

Locality: Wollongong, New South Wales

Address: Suite 7, 104 Crown Street Wollongong, NSW, Australia

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

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• Medical and health
• Non-profit organisation
• Charitable organisation

25.01.2022 Did you know the use of antibiotics may differ for those living with primary immunodeficiencies? PID UK have a great resource about antibiotics for PI patients. Click here to find out more: http://www.piduk.org/static/media/up/PIDUKantibiotics.pdf

24.01.2022 Please share. International Plasma Awareness Week is not far away. Be a plasma hero and make an appointment at Australian Red Cross Lifeblood to donate plasma.

23.01.2022 A new day, a new week. Let's do this! #Motivation #ChronicIllness #sdg3

23.01.2022 Tom has been fighting a long and difficult battle with Severe Combined Immunodeficiency (SCID). His family would like to return home to Queensland for his final days. Please share.

23.01.2022 Rare Voices Australia launched The National Strategic Action Plan for Rare Diseases in February this year. The Action Plan is made up of three core Pillars. Today we present Pillar 1: Awareness and Education - The National Strategic Action Plan for Rare Diseases You can read a summary of the Action Plan here: http://ow.ly/dyPd50Bd42Z... http://ow.ly/dV1750Bd42j

22.01.2022 Please share this video so we can raise awareness of primary immunodeficiencies. This fantastic presentation from the Garvan Institute of Medical Research highlights many of the reasons why it's so challenging for those living with rare primary immunodeficiencies to reach a diagnosis. Michael's journey of diagnosis was a long and arduous one with no definitive answers to his ongoing illness. Many PI patients are put in the "too hard basket" or accused of being hypochondriacs.... Primary immunodeficiency is a lifelong illness which requires lifelong treatment. https://fb.watch/1IlNqwdhQ5/ #Awareness #PrimaryImmuneDeficiency #Immunodeficiency #sdg3

22.01.2022 Planning ahead for 2021; it's organised chaos!

21.01.2022 COVID-19 vaccine manufacture is underway by CSL Behring. We wait with hope in our hearts that trials are successful. http://ow.ly/9GcZ50Ci7V5

20.01.2022 Today we commemorate those who served, those who are currently serving and those who lost their lives while serving in the defence forces. #WeRememberThem

19.01.2022 Thanks to our junior IDFA members who entered our Design a PI Superhero competition. We received so many great ideas - animations, artwork, digital designs, PI superheros fighting viruses on the city streets including some with plasma power. One of our younger members has been learning all about the power of plasma. Meet Super Charlie, his special superhero power is "Super SCIG." This one made us smile and provided a little extra Christmas cheer as 2020 draws to a close. ... Discover the power of plasma and find out how you can donate here: https://www.donateblood.com.au/

19.01.2022 It's not too late to register for our presentation tomorrow evening on 'All things SCIg'. Register at Eventbrite: https://www.eventbrite.com.au/o/immune-deficiencies-foundat #Immunoglobulin #IgTherapy #Immunodeficiency #Plasma #sdg3

19.01.2022 #HappyNewYear #Immunodeficiency #Community

19.01.2022 Many treatments available to primary immunodeficiency patients are suitable for those living with a secondary immunodeficiency. This recent webinar from Ipopi discusses the crossover between both types of immunodeficiencies. https://www.youtube.com/watch?v=IDZpJ2qefrA&feature=youtu.be

18.01.2022 #PrimaryImmunodeficiency #Awareness #Education

18.01.2022 This week we recognise and celebrate NAIDOC week. #NAIDOC2020 'Always Was, Always Will Be' recognises that First Nations people have occupied and cared for this continent for over 65,000 years. Find out more about NAIDOC 2020 Events here: https://www.naidoc.org.au/get-involved/naidoc-week-events

18.01.2022 IDFA are pleased to announce the appointment of new Board member Dr. Luke Droney. Luke is a Clinical Immunologist, Allergist and Immunopathologist Immunodeficiency is his main clinical interest and he has begun a dedicated Primary Immunodeficiency clinic, the only one of its kind in Queensland. Luke is passionate about applying new diagnostic modalities and novel treatments to improve patient outcomes in immunodeficiency. We welcome Luke to the IDFA Board.

18.01.2022 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 Parlia...mentary 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 Tuesday 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

18.01.2022 The 4th revision (dated 27th November 2020) of the Worldwide Joint Statement for COVID-19 in children and adult patients with primary immunodeficiencies (PID's) has been published. Click below to find out more: http://ow.ly/79ab50CyI9B... #COVID19 #PrimaryImmunodeficiency #PrimaryImmuneDeficiency

17.01.2022 ASCIA's fact sheet about immune system disorders. A simple explainer such as this can be a useful tool for self-advocacy. https://www.allergy.org.au//ASCIA_PCC_Immune_System_2019.p #ImmuneSystem #ImmuneHealth #PrimaryImmunodeficiency

17.01.2022 #Motivation #SelfCare #ImmuneHealth

17.01.2022 Hey! have you heard of our Bitesize Science virtual seminars? Theyre new, short, and sweet. Join me as I go through my research on the immune system and how it impacts human health, particularly as it relates to immunity, autoimmunity, and cancer. Book your spot now!

16.01.2022 From everyone at IDFA we wish you joy and health this holiday season. We would like to extend our best wishes and strength to those who might be in need of a litte extra support today. #CareAboutRare #PrimaryImmunodeficiency

15.01.2022 Are you holidaying at home? We'd love to hear how you're spending your "stay-cation". http://ow.ly/jnKc50CTzIk

14.01.2022 Are you an IDFA member? Did you know our resources are not just for you? If you would like to order resources for your GP, psychologist, school or even family members get in touch. Place your order here: http://ow.ly/xWPR50B6TGC P.S. IDFA membership is FREE. Become a member here: http://ow.ly/AflU50B6TGB

14.01.2022 Have you been put in the "too hard basket"? Accused of being a hypochondriac or faking it? Sadly, we hear this far too many times. http://ow.ly/mCFK50Cno8e... #RareDisease #CareAboutRare #PrimaryImmunodeficiency

14.01.2022 For those of you wanting to know more about genetic medicine and genetic screening, particularly if you're trying to conceive. #Genetics #Education #DNA

13.01.2022 Would you like to contribute to next years World PI Week Campaign? World PI Week is held between 22-29 April each year with the aim of raising awareness as well as improving diagnosis and treatment for those living with primary immunodeficiencies. Read on to discover how you can contribute...

13.01.2022 September is Newborn Screening Awareness month. SCID newborn screening is already standard practice in many countries including the USA, Canada, Norway, Spain and New Zealand. Not in Australia. IDFA are advocating for funding to be made available for routine inclusion of this lifesaving testing into newborn screening in all states and territories. ... Discover how you can support our advocacy campaign here: http://www.idfa.org.au/support-newborn-screening-for-sever/ You can then download: - Petition documents for your state or territory - Template letter for MP's - Link to search for your local MP Every signature counts! If your petition has only ONE signature please mail it to us. #NewbornScreening #Awareness #SCID #PrimaryImmunodeficiency

13.01.2022 Thank you to Rare Voices Australia for all the work you do for the rare disease community.

13.01.2022 An IPOPI Clinical Care Webinar on PID's and Vaccines is being held next week. "This IPOPI webinar will explore the vaccines recommendations for primary immunodeficiency patients." Wednesday, 9th September at 3pm UK time (which makes it midnight AEST!)... If you think you can stay awake for this one click here to register: http://ow.ly/QysD50Bei07 http://ow.ly/tyg850Bei08

13.01.2022 Learn more about Rare Voices Australia Pillar 2: Care and Support - The National Strategic Action Plan for Rare Diseases http://ow.ly/KdO350Bd40a

12.01.2022 "Rather than negate the concept and necessity of goal setting, I want to encourage people to set goals within the realistic realm of ones own abilities." http://ow.ly/Y27B50B4aXC #ChronicIllness #Goals #LifeGoals #Immunodeficiency #Fatigue

11.01.2022 The holiday season may feel quite different this year. Beyond Blue have some tips on keeping expectations realistic. http://ow.ly/uWHJ50CTxJG #PrimaryImmunodeficiency #MentalHealth #Christmas

11.01.2022 Join us next week for this FREE presentation. - Pros & cons of SCIg therapy - Access to SCIg, who qualifies - Travelling while on SCIg therapy - Patient experiences... Register your interest via our Eventbrite page: https://www.eventbrite.com.au/o/immune-deficiencies-foundat #SCIG #immunoglobulin #immunodeficiency

11.01.2022 Have you signed our petition yet? IDFA are advocating for funding to be made available for routine inclusion of this lifesaving testing into newborn screening in all states and territories. SCID newborn screening is already standard practice in many countries including the USA, Canada, Norway, Spain and New Zealand. Discover how you can support our advocacy campaign here: http://www.idfa.org.au/support-newborn-screening-for-sever/... You can then download: - Petition documents for your state or territory - Template letter for MP's - Link to search for your local MP Every signature counts! If your petition has only ONE signature please mail it to us. #NewbornScreening #Awareness #SCID #PrimaryImmunodeficiency

11.01.2022 To our friends in Victoria, if you have asthma, respiratory or allergy issues please take care today. http://ow.ly/jQIK50Ch4DP

10.01.2022 Please share. Let's make this happen! IDFA are advocating for funding to be made available for routine inclusion of this lifesaving testing into newborn screening in all states and territories. Discover how you can support our advocacy campaign here: http://www.idfa.org.au/support-newborn-screening-for-sever/... You can then download: - Petition documents for your state or territory - Template letter for MP's - Link to search for your local MP Every signature counts! If your petition has only ONE signature please mail it to us. #NewbornScreening #Awareness #SCID #PrimaryImmunodeficiency

10.01.2022 Meet another PI Superhero created by a junior IDFA Member in our recent Design a PI Superhero competition. Brace yourselves, this one is quite powerful! Introducing Miss G, a Goblin Superhero. Miss G infuses people, protecting them from their arch enemy. VIRUSES! Her teleportation powers allow her to move quickly to catch those nasty viruses in time. ... Miss G’s sidekicks, Medusa and Toin are half-human and half-cat (pets as therapy!) who each have their own special powers. Together this team are a force to be reckoned with!

10.01.2022 Thinking of those who are going through tough times.

10.01.2022 September is Newborn Screening Awareness month. Please help us to achieve funding for SCID newborn screening by signing our petition. Download the petition for your state or territory here: http://www.idfa.org.au/support-newborn-screening-for-sever/... EVERY SIGNATURE COUNTS! If your petition only has 1 or 2 signatures please mail it to us. (NOTE: Be sure to return original petitions NOT copies/scans) SCID Newborn screening is already standard practice in many countries including the USA, Canada, Norway, Spain and New Zealand. We want the same for Australia. A pilot program has commenced in NSW, but funding should be made available for the routine inclusion of this lifesaving testing into newborn screening in all states and territories of Australia. The technology is available, and the clinical need is undeniable.

10.01.2022 Rare Voices Australia Pillar 3: Research and Data - The National Strategic Action Plan for Rare Diseases http://ow.ly/cxHb50Bd3X9 You can read the complete National Strategic Action Plan for Rare Diseases (launched in February 2020) here: http://ow.ly/r4zF50Bd44z

08.01.2022 "COVID-19 and Primary Immunodeficiency: An update" AusPIPS Inc. will hold a public forum on Thursday 26th November. Speakers include: - Dr Charlotte Slade, Clinician at The Royal Melbourne Hospital - A/Prof Menno van Zelm, Researcher at Monash University and The Alfred... - Mr Richard Hession, Physiotherapist - Dr David Church, General Practitioner - Ms Jo Cameron, NBA Register your interest at Eventbrite: http://ow.ly/F8wn50CbYyN

08.01.2022 Today we said farewell to long-time IDFA employee and champion of rare disease, Chloe Appleton. IDFA is going to miss you Chloe. We wish you well for the future. Thanks to Cafe at Lewers for a lovely lunch. Good food, lovely gardens and most of all great company!

07.01.2022 PID's & vaccines. The latest IPOPI Clinical Care webinar about primary immunodeficiency and vaccines is now available to watch. You can watch it here along with many other informative presentations: https://tv.ipopi.org/... #PID #Education #sdg3

07.01.2022 #SCID #NewbornScreening #Awareness

06.01.2022 Understanding how to increase selection of antibodies that dont bind self may illuminate a pathway to long-lived immunity against COVID-19. http://ow.ly/FJiq50BjrHl #ImmuneHealth #Immunity #covid19

06.01.2022 These fact sheets are simple explanations about genetic testing and genome sequencing. These types of tests can potentially uncover faulty gene variants.

05.01.2022 Join us next week for this educational presentation on 'All things SCIg'. We'll also be hearing from several IDFA members talking about their experience with SCIg therapy. Register at Eventbrite: https://www.eventbrite.com.au/o/immune-deficiencies-foundat... #Immunoglobulin #SCIG #therapy

05.01.2022 What is convalescent plasma? This article from ABC News explains in simple terms why it is so important right now. For those of you who can donate keep your plasma donations coming in and make an appointment at Australian Red Cross Lifeblood today. https://www.abc.net.au//what-is-convalescent-plas/12571462

05.01.2022 What started in the United States as a day for anyone, anywhere to give, has grown into the biggest giving movement in the world. Get inspired to give back, not just on GivingTuesday, but any day! IDFA strives to provide education, advocacy and awareness of primary immunodeficiencies in the public and medical communities. Discover how you can "give back" and support our work in making a difference in the life of someone living with a primary immunodeficiency here: https://w...ww.idfa.org.au/donate/ #GivingTuesdayAUS

04.01.2022 Thanks to Dolly's Dream for this. #LifeIsGood #BeKind #Caring #CareAboutRare

04.01.2022 IDFA are getting in on this, are you? On Friday 9th October we'll be wearing our odd socks and we would love to see you in yours. Take a photo of your odd socks and tag us in. #reducethestigma

04.01.2022 The Australian Medical Association have updated their policy on genetics to include genomic medicine. To understand the difference between genetic testing and genomics Melbourne Genomics Health Alliance have an explanation here: http://ow.ly/LBax50BjrOB... http://ow.ly/nc6I50BjrOC

03.01.2022 #LifeGoals #Motivation #sdg3

03.01.2022 IDFA have just received official communication from the Hon Brad Hazzard MP, Minister for Health and Medical Research advising us NSW Health will continue SCID newborn screening for another 2 years! What a great way to end the week! #SCID #NewbornScreening #Awareness #LifeIsGood

01.01.2022 A message from Chloe: The immunodeficiency community is resilient, empathetic and adaptive. Ive seen many of you overcome some of lifes toughest challenges, including severe needle phobias, school bullying, whole lifestyle changes and managing complex health problems. There has been grief and loss; seeing you all be there for each other in those dark times has truly shown the strength and warmth of this community. There has also been so much joy and laughter, the conference...s, the chats, visits. While I am sad to be leaving my role of IDFAs Member Support I am so excited to see whats in store for IDFA next. What started out as just two employees and 200 members 8 years ago, has flourished into a community of 2000 members and a title of national peak patient body for immunodeficiency. I am so proud of IDFA and what we have achieved so far. With Carolyn as the new EO, and a whole office full of passionate staff, volunteers, and placement students, the IDFA is about to enter a whole new era offering support, education and resources for members. My time at IDFA has been enriching and rewarding. And getting to know you and your experiences over this time has taught me a lot about life, about overcoming obstacles and problem solving, and about maintaining grace in times of hardship. Im not going to say goodbye because I feel a part of my heart will always be a part of the IDFA. Ill still be floating around in the distance, stay in touch! Whether you are a patient or professional, please reach out to our new EO, Carolyn or our lovely team to introduce yourselves, share your story, or even just to say hi! For now, I will leave you with my saying that you are all probably very sick of hearing after all this time You cannot serve from an empty vessel. Learn to rest and self-care, when you replenish your spirit it allows you to serve others from the overflow - Eleanor Brownn Stay safe and be kind to one and other, Chloe. See more

01.01.2022 Now more than ever we need to look out for each other. Learn how to ask "R U OK?" with these tips from R U OK Day and start a conversation. If you or anyone you know are in crisis please reach out to Lifeline on 13 11 14. #Education #Awareness #MentalHealth #reducethestigma