Welcome to IDFA
Living with a primary or secondary immunodeficiency?
Do you find yourself looking for extra support and acceptance?
Let’s face it, living with an immunodeficiency impacts on all aspects of your health and lifestyle.
Welcome to IDFA
Through the Immune Deficiencies Foundation Australia (IDFA)
you can meet people who are living through similar experiences.
And by accessing our education, awareness and advocacy programs you will
discover a new world of information. At IDFA we strive to be that “extra” for you.
We offer a range of resources, educational programs, webinars, patient meetings and conferences for Australians living with immunodeficiency.
Increasing awareness of immunodeficiency through awareness campaigns, community education and influencing policy makers.
Advocating on a range of issues significant for patients with primary and secondary immunodeficiencies.
IDFA is a national not-for-profit and leading peak body offering education, advocacy and awareness for Australians living with primary or secondary immunodeficiencies. In conjunction with our community-focussed model of care IDFA assists in achieving improved patient outcomes and quality of life. With the support of our medical advisory panel and through national and international relationships IDFA is a respected organisation within the medical and patient community.
Meet Laurie and Beccy, sisters who both live with an immunodeficiency. Laurie has a confirmed diagnosis of Common Variable Immunodeficiency (CVID) while Beccy is still waiting on a definitive diagnosis. Both girls are susceptible to frequent bouts of illness and suffer from fatigue, common among primary immunodeficiency (PID) patients.
So, what does it take to care for children living with a rare disease? It takes a lot of patience, planning as well as love and understanding. In this story their parents offer a carers perspective and share their tips on caring for children with a PID.
Married with three grown children, Sharon was living a full life when a medical event turned her life upside down. Hospitalised and in a life-threatening situation she eventually recovered only to receive a diagnosis of Common Variable Immunodeficiency (CVID). Sharon relies on regular intravenous immunoglobulin therapy (IVIg) to keep infections at bay and delights in being a grandmother.
Born in the United Kingdom Kayleigh was a sickly child and eventually received a diagnosis of Common Variable Immunodeficiency (CVID). During her teenage years she began subcutaneous immunoglobulin therapy (SCIg) to keep continuous infections under control. After being advised her lifestyle would be compromised, she went on to complete her university education, travelled to Australia and started a family. Kayleigh continues to receive SCIg therapy.
Held on the last day of February each year Rare Disease Day is an international campaign aimed at raising awareness of rare diseases amongst the general public and decision...
Due to the impact of COVID-19 we have already started to change our Business Model so that we are able to provide our education, awareness and advocacy campaigns online,...
You can make a difference in the lives of Australians living with a rare disease.
Become a Member
Join the IDFA community to access a range of resources, events and connect with patients and carers.
We’re developing a range of services and events for IDFA members. Keep watching our News & Events page for updates.
The IDFA has been a great way to connect with other families with similar experiences, which has allowed access to a wealth of knowledge. The IDFA annual conference was also an amazing opportunity to learn and provided so much information. The IDFA has offered so much support, including Carers' events and resource material, which are great to give to kids' schools. Their Facebook groups have been a great place to ask questions and advice. So pleased to have found the IDFA, and would 100% recommend it to anyone seeking advice, support, information or resources.
When I got sick in 2011 I felt so alone, I had never heard of CVID. Then it was recommended to contact IDFA. I found people all over Australia that were the same as me. It has been a godsend.
My name is Row and I am from NSW. After years of recurrent infections saw an amazing new immunologist who diagnosed me with a rare primary immunodeficiency. I found IDFA via Google and have found the support and resources from IDFA amazing. IDFA very quickly sent me a pack of great resources and also some resources for my GP. The Facebook group has been great, have learnt so much and receiving a phone call to check in made me feel supported and welcomed.