Gene Therapy and SCID Invitation to join the SCID Advocacy Group Meeting with special guest speaker Dr Lorna Mc Leman providing an update on a current Gene Therapy study. The SCID advocacy group has been meeting regularly since 2021 to move forward SCID advocacy across all states and territories. This month, we are inviting all SCID […]
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. You can also post your questions to members of the Medical Advisory Committee to be answered during […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
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. […]
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 […]
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 […]
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 […]