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Australia

Australian IBD organisations

Find Australian IBD organisations, support services and reliable information for children and families living with Crohn’s disease and ulcerative colitis. Discover ways to connect with other families, find IBD services and join the IBD Kids Facebook Group.

Finding out that your child has Crohn’s disease or ulcerative colitis (IBD) can leave you with lots of questions.


You may be looking for reliable information, someone who understands what your family is going through, support for your child, or other families who have been through similar experiences.


Australia has organisations and services that can help you find information, support, connections and practical resources throughout your IBD journey.


🩺 Crohn’s & Colitis Australia

Crohn’s & Colitis Australia (CCA) is the national organisation supporting people living with Crohn’s disease and ulcerative colitis in Australia.


CCA provides information and support for people with IBD, parents and carers, children and teenagers, as well as the wider IBD community.

Their support services include:

  • IBD information and education

  • Support groups

  • Peer support

  • Telephone support

  • An IBD NurseLine

  • Information forums

  • Resources for children, teenagers and parents

  • An IBD service locator

  • Youth programs and activities

  • Personal stories and lived-experience information

CCA also provides an IBD Service Locator, which can help families find IBD and gastroenterology services around Australia. Access to specialist IBD services will usually require a GP referral.

🤝 Finding support from other people with IBD

Sometimes you don't need another medical explanation. You just need to talk to someone who understands.


Support groups can give people living with IBD and their families an opportunity to meet others who have experienced similar challenges.


CCA has support groups for people affected by Crohn’s disease and ulcerative colitis, including family members and carers.


Connecting with other families can help you feel less alone and give you a place to share experiences, ask questions and learn how other people manage life with IBD.


☎️ Telephone support

If you have a question or need someone to talk to about IBD, CCA provides telephone support.


Their Crohn’s & Colitis Helpline provides general information and guidance, while their IBD NurseLine provides specialised information and guidance from an IBD nurse. Topics can include medications, investigations, treatment, diet, paediatric IBD, school and everyday life with IBD.


The CCA support number is 1800 138 029.


These services are not an emergency service. If your child is seriously unwell or you believe they need urgent medical attention, seek medical care immediately.


👧 Support for children and teenagers

Children and teenagers can have very different experiences of IBD from adults.


They may worry about:

  • Going to school

  • Using the toilet around other people

  • Missing activities

  • Explaining IBD to friends

  • Taking medication

  • Hospital appointments

  • Feeling different from their classmates

  • Making plans when they don't know how they will feel


Australian IBD organisations provide resources and programs specifically for young people.


CCA has information for children, teenagers and parents, as well as youth programs designed to help young people connect with others living with IBD.


🧑‍🤝‍🧑 Connecting with other families

Living with childhood IBD can sometimes feel isolating.


You may not know another family whose child has Crohn’s disease or ulcerative colitis.


Connecting with other parents can give you an opportunity to:

  • Share experiences

  • Ask practical questions

  • Talk about school

  • Discuss everyday challenges

  • Learn how other families manage appointments

  • Find encouragement during difficult periods

  • Help your child feel less alone


Remember that everyone's IBD journey is different. What works for one family may not work for another, so use other people's experiences as support rather than as medical advice.


📚 Finding reliable IBD information

There is a huge amount of information about IBD online, and not all of it is accurate or appropriate for children.


When you're looking for information, try to choose sources that:

  • Clearly distinguish information from medical advice

  • Are relevant to Australia when discussing Australian healthcare

  • Consider the differences between adults and children

  • Encourage you to speak with your healthcare team about individual decisions


Your child's gastroenterologist, IBD nurse, GP and other healthcare professionals should remain your main source of advice about your child's individual treatment and care.


🏥 Finding your local IBD service

Your child's IBD care may involve a paediatric gastroenterologist, IBD nurse, dietitian, psychologist and other healthcare professionals.


Where you live can affect which services are available to you.


Some families may have access to a large paediatric IBD centre, while others may need to travel to access specialist care.


If you're looking for an IBD service, ask your GP or healthcare team about services available in your area.


💙 Join the IBD Kids community

At IBD Kids, we want families to have a place where they can find information, practical resources and connection in one place.


Our IBD Kids Facebook Group is a space for parents and families to connect with others who understand what it's like to navigate childhood IBD.


You can use the group to:

  • Connect with other parents

  • Share experiences

  • Ask practical questions

  • Talk about school and everyday life

  • Find encouragement from other families

  • Celebrate the good days

  • Know you're not the only one going through this


Join our IBD Kids Facebook Group and connect with other families living with IBD.


🌏 You're not alone

A diagnosis of Crohn’s disease or ulcerative colitis can feel overwhelming, especially when you're trying to understand a new diagnosis, medications, appointments, school and everything else that comes with IBD.


You don't have to figure everything out at once.


Use Australian IBD organisations and support services to find reliable information, connect with other people and learn where to get help when you need it.


And remember, you are not alone in this journey.

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Important Information
IBD Kids provides general health information and resources for education and support.  Our content does not replace advise from your child's doctor or healthcare team. Always seek professional medical advice for individual concerns.

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In an emergency
If your child is seriously unwell or you think they need urgent medical attention, seek medical care immediately.

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