IDFA

IDFA Community Catchup - All Members
2024-04-10 17:30 - 18:30, 2024-04-03 17:30 - 18:30 (Australia/Melbourne) | Online via Zoom, Australia
IDFA Community Catchups are informal, zero-expectation, member-led spaces where our members can come and connect with other humans that know what they’re going through. This Community Catchup is for all of IDFA’s male members and is hosted by IDFA member Pearl.
To join this catchup you will need to RSVP via the website link below to receive the details of how to join.

IDFA Community Catchup – Male Members
2024-04-08 18:30 - 19:30, 2024-04-01 18:30 - 19:30 | Online via Zoom, Australia
IDFA Community Catchups are informal, zero-expectation, member-led spaces where our members can come and connect with other humans that know what they’re going through. This Community Catchup is for all of IDFA’s male members and is hosted by IDFA member Dale.
To join this catchup you will need to RSVP via the website link below to receive the details of how to join.

IDFA Community Catchup - All Members
2024-04-04 18:30 - 19:30 | Online via Zoom, Australia

Immunodeficiency Insights: Update: Gut Health and Immunodeficiencies
2024-03-21 19:00 - 20:00 | Online via Zoom, Australia
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.
Expert Presenters:
Assoc. Professor Dr Jason Tye-Din – Gastroenterologist/Researcher
Chiara Miglioretto (Gut Friendly Dietitians) – Dietitian
IDFA Member Insights:
Kelly Lambert – Carer of Child with PI and Dietitian

IDFA National Conference 2024
2024-03-16 13:00 - 2024-03-17 13:00 | Rydges Sydney Airport, 8 Arrival Ct, Mascot, NSW, 2020, Australia
Join us on Saturday 16 and Sunday 17 March 2024 for the IDFA Annual Conference in Sydney.
This 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.
Event Timings

Saturday 1-5pm – Conference
Saturday 6pm – Conference Dinner
Sunday 9am-1pm – Conference

Conference Costs
IDFA 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.
To RSVP please contact us at ???? info@idfa.org.au or 1800 100 198.

Immunodeficiency Insights: Voices of IDFA Resource Launch
2024-02-29 19:00 - 20:00 | Online via Zoom, Australia
Rare Disease Day aims to maintain a strong focus on Rare Diseases like Primary Immunodeficiencies in research and advocacy.
This 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.
This webinar will also have a special focus on the role of member stories
Keynote Speakers
Carolyn Dews – IDFA – CEO
Estela Gimenez – IDFA – Programs Coordinator
IDFA Member Insights:
Louise Grant
Kylie Downie

Brisbane Member Meeting
2024-02-10 10:00 - 13:00 | Mary Mae’s Bar & Kitchen, Brisbane Powerhouse, 119 Lamington St, New Farm, QLD, 4005, Australia
You Are Invited To…
Leisurely Brunch On The Waterfront
IDFA 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.
“Blossoming Together”
Blossoming Together symbolises the growth, resilience and vibrancy of our community.
Event Highlights

Meet 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.
Speakers – Be empowered by valuable information provided by an IDFA representative, healthcare professionals and our own members’ insights.
Delectable Brunch – Enjoy a delicious brunch with tea/coffee and a choice of menu options. Savour flavours while enjoying garden views!
Networking – Forge new connections with members who understand the challenges and victories of living with immunodeficiency. Together, we are stronger.

RSVP via email info@idfa.org.au or phone 1800 100 198

Immunodeficiency Insights: Update: COVID-19 Variants and Vaccinations
2024-02-01 19:00 - 20:00 | Online via Zoom, Australia
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.
The webinar will feature health professionals and member insights.
Keynote Presenter:
Dr Katrina Randall
IDFA Member Insights:
Barbara O’Neill
Expert Speaker:
Dr Emily Edwards

December PI Education Webinar: NDIS and Primary Immunodeficiencies
2023-12-12 19:00 - 20:00 | Online via Zoom, Australia
Many members facing significant challenges living with, or caring for a person with, a Primary Immunodeficiency, have found the NDIS process very challenging.
Mandy 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.
Keynote Speakers

Mandy Drain – Taylor Made Outcomes

Canberra Member Meeting
2023-12-09 09:00 - 12:00 | Crosbie Morrison Building Australian National Botanic Gardens, Tourist Drive 2, Clunies Ross St,, Acton, ACT, 2601, Australia
You Are Invited To…
Leisurely Brunch at the Botanical Gardens
IDFA 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.
“Blossoming Together”
Blossoming Together symbolises the growth, resilience and vibrancy of our community.
Event Highlights

Meet 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.
Speakers – Be empowered by valuable information provided by an IDFA representative, healthcare professionals and our own members’ insights.
Delectable Brunch – Enjoy a delicious brunch with tea/coffee and a choice of menu options. Savour flavours while enjoying garden views!
Networking – Forge new connections with members who understand the challenges and victories of living with immunodeficiency. Together, we are stronger.

RSVP via email info@idfa.org.au or phone 1800 100 198

Melbourne Member Meeting
2023-12-02 10:00 - 13:00 | The Terrace Café Melbourne Botanic Gardens By The Lake, Corner Alexandra Avenue &, Anderson St,, South Yarra, VIC, 3141, Australia

November PI Education Webinar: Men's Health and Primary Immunodeficiencies
2023-11-30 19:00 - 20:00 | Online via Zoom, Australia
There is little information available about the impacts of Primary Immunodeficiencies (PIs) on men’s physical and mental health.
This 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.
Keynote Speakers

Dr Karuna Keat – Immunologist
Mitch Durbridge – Clinical Psychologist

IDFA Member Insights

Adam Friederich
Richard Price
Dale Dominey-Howes

October PI Education Webinar: Plasma Update and Donation Advocacy
2023-10-26 19:00 - 20:00 | Online via Zoom, Australia
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.
Keynote Speakers

Jo Cameron National Blood Authority – Director Commercial Blood Products
Sally Deveson Lifeblood ACT – Community Relations Officer

IDFA Member Insights

Hayley Teasdale – Lifeblood Volunteer and IDFA member

September PI Education Webinar: Newborn Screening for SCID – A Brave New World
2023-09-26 19:00 - 20:00 | Online via Zoom, Australia
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.
Keynote Presenter: Dr Kahn Preece, NSW Paediatric Immunologist
Member Insights: Louise Grant

August PI Education Webinar: Young Adult Members Transitioning into Adult Care
2023-08-29 19:00 - 20:00 | Online via Zoom, Australia
Young Adult Members Transitioning into Adult Care

Are you a young adult member moving into the adult health care system?
Are you a carer member wanting to know how to support a young adult making this transition?

We 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.
In 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.

PI Education Webinar - GP Awareness of Immunodeficiencies
2023-07-27 19:00 - 20:00 | Online via Zoom, Australia
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.
Unfortunately, GPs can often mistake the warning signs of an immunodeficiency, leading to complications from ongoing infection, avoidable hospitalization and deteriorating mental well-being.
Our next webinar is for both GPs and community members to support earlier detection in our community and promote quality of life:

What signs can GPs look for?
What can GPs do to support earlier diagnosis?
What can members do to work with their GP to self-advocate and support awareness?

Please 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.

PI Education Webinar - Travel Smart with Immunodeficiency
2023-06-27 19:00 - 20:00 | Online via Zoom, Australia
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.
Our 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.
Please 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.
If 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!
Please 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.

Use Your Voice - Self Advocacy
2023-05-04 19:00 - 20:00 | Online via Zoom, Australia
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.
Guest 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.
Attendees 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.
The Self-Advocacy Toolkit is a comprehensive resource that provides individuals with a way to take control of their healthcare journey.
Guest Speakers include:

Christine Jeffery – Vice President IPOPI, IDFA National Patient Advisory Panel Member and CIRCA Board Member
Louise Healy – Education and Advocacy Manager at Rare Voices Australia
Geraldine Dunne – Clinical Nurse Consultant Immunology & Infectious Disease at Sydney Children’s Hospital Network
IDFA Members
