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Real People Real Stories Real Support

ANZFAID - Australia and New Zealand Forum for AutoInflammatory Diseases

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ANZFAID is proud to be the only locally led and run organisation in Australia and New Zealand dedicated to the full spectrum of systemic autoinflammatory diseases. Our team doesn’t just understand these conditions, we live with them.

We know the fear, the confusion, the endless searching for answers, and the relief that comes from finally finding people who get it. That’s why having local support, built on real experience and real understanding, matters so deeply.

Our commitment is personal. We stand beside individuals and families through advocacy, awareness, education, and genuine community connection, providing a link not to just peers but to health professionals and researchers. Together we will push important research conversations forward, promoting earlier diagnosis, and providing clear, accessible information, ANZFAID is helping patients and carers feel informed, empowered, and less alone.

Together with a growing and fiercely supportive community, ANZFAID is working toward a future where autoinflammatory diseases are recognised sooner, understood better, and managed with greater confidence, so every person affected feels seen, supported, and never left to navigate this journey alone.

Patient Cards are now available for SAIDs patients in Australia & New Zealand.

We have a limited supply of cards available.

Choose from a general SAIDs card, FMF or CAPS cards.

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Our mission is to enhance the well-being and care of all people living with autoinflammatory diseases in Australia and New Zealand, by providing comprehensive dedicated, local support, information and advocacy.

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By sharing your story it helps us to bridge the gap between patients, carers and the medical community. Each story provides valuable insight for patients and medical professionals so we can all work towards a better world for those living with autoinflammatory diseases.

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What are Systemic AutoInflammatory Diseases (SAIDs)?

image is of a crying baby and a parent with thermometer
image is an older gentleman clutching his knee
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  • SAIDs are considered a rare group of diseases as they affect less than 5 in 10,000 people.
  • The term autoinflammation was first used in 1999. From there autoinflammatory diseases became their own recognised group of diseases.
  • Currently include 40 plus recognised SAIDs and are an area of rapidly evolving research and information.  
  • SAIDs are thought to be caused by an unprovoked abnormal activation of the innate immune system. The innate immune system is the defence system with which you were born, whereas autoimmune diseases involve the adaptive immune system. When SAID inflammation occurs, the immune cells attack healthy body tissues and organs.
  • SAIDs are often hereditary, and the genetic variants are passed down through families but can occur as spontaneous variants.
  • SAIDs are difficult to diagnose and often remain unrecognised, misdiagnosed or undiagnosed, often for decades.
  • Can often overlap with autoimmune diseases.
  • SAIDs affect people of all ages and genders.
  • We are learning all the time, as new research emerges.

Symptoms

The most common symptoms are

  • recurrent fevers,
  • abdominal pain,
  • joint and/or muscle pain/swelling, diarrhoea,
  • vomiting,
  • headaches,
  • swollen lymph nodes,
  • mucosal ulcers,
  • skin rashes.

Some SAIDs may impact vision, hearing, and balance.

Systemic inflammation may also cause fatigue, mood swings, lack of concentration, bad memory and brain fog.

Diagnosis

Several of these diseases can be diagnosed through genetic testing, but not all. Many patients are given a clinical diagnosis based on signs and symptoms.

In other cases, like FMF, even though a genetic test can be done, sometimes no significant variations are found.


A common misconception is that the patient needs to have two variations to be diagnosed with FMF. Genetic testing is a key area of research and development.


Early detection and diagnosis, correct treatment, management and medication will help prevent potential complications in most cases.

Treatment

There is currently no cure, but control of symptoms can often be achieved.


There are several well studied and researched medication options that can be prescribed to treat disease and manage symptoms. 


Some examples are colchicine, corticosteroids, biologics, anti-inflammatories, and a range of pain medications.


Most medication options are accessible using an authority script on the PBS (Pharmaceutical Benefits Scheme) from your medical practitioner.


Unfortunately, access to biologics can be a complicated process in Australia.

Diagnosing AutoInflammatory Diseases

Most commonly your general practitioner (GP) can refer you to a rheumatologist or immunologist. However, any specialist with the necessary knowledge may be able to recognise and diagnose SAIDs.

Some SAIDs are so complex that they require a multidisciplinary team approach, including specialty areas such as gastroenterology, cardiology, dermatology, neurology, and infectious diseases. Given that SAIDs are an emerging specialty, they have not been a traditional topic of healthcare training.

Our organisation welcomes all healthcare professionals, patients, carers, and the general community, who wish to learn more about these diseases.

Support when living with a disability

Many of these conditions may not exhibit externally visible signs or symptoms. However, the pain and fatigue are genuine and many experience limitations that impact everyday life.

Reasonable adjustments may need to be made in order to participate in activities of daily living including school and work. Accessing Allied Health can be useful.

It is important to support patients and carers with appropriate health, financial, housing, social, educational and employment opportunities, and if the time comes, access to Services Australia (Centrelink) welfare support options. The National Disability Insurance Scheme (NDIS) may also be accessed.

OUR LOGO 

Our logo is designed to reflect the essence of our mission and the journey towards understanding AutoInflammatory Diseases and the desired healing process for those affected. 

The Flame: A powerful symbol of inflammation, a core characteristic of AutoInflammatory Diseases. It captures the intensity and impact of these conditions. It also represents hope.

The DNA Strand: Represents the genetic nature of many AutoInflammatory Diseases, highlighting their connection to inherited factors. The DNA subtly intertwines with the flame, signifying the link between genetics and inflammation, while also resembling a candle—a guiding light of hope.

The colours in our logo were carefully chosen to convey our values:

  • Red hues evoke inflammation, heat, and the immune response.
  • Blue hues stand for healing, medical research, and support.

The gradient of colours shows the transition from inflammation to healing, aligning with our mission to provide solutions and care. 

The circular design embodies unity, collaboration, and community—representing the partnership between patients, researchers, and healthcare providers. The shield-like shape signifies protection, advocacy, and the unwavering support we offer to those affected by these conditions.

 Thank you to our sponsors and supporters.

 "Alone we can do so little, together we can do so much"

- Helen Keller

ANZFAID is a registered not-for-profit charity with all proceeds going directly to expanding the work of ANZFAID within the autoinflammatory disease communities in Australia and New Zealand. Without our sponsors and supporters we would not be able to continue to raise awareness of autoinflammatory diseases. 

If you would like to become a sponsor or supporter of ANZFAID, please email us and we can get the conversation started.