Child & Family

Weclome - This page has articles, resources and information for parents and carers raising children with haemoglobin blood disorders and for children and teens. We will be regularly updating & developing this page. We hope you fnd it useful... 


1 - Sickle Cell Disease: A booklet for patients, parents and the community

This booklet is available online from TIF - English version... download

2 - All about Thalassaemia - Cartoon video

A short cartoon explaining thalassaemia for kids and parents and for kids to show to their friends ... see Video 

3 - Iron Warriors

Find information to manage to help you stay strong, fit and keep doing the things you love. Website & Resources availble in English, Indonesian, Turkish, Arabic, Mandarin & Portuguese.

4 - beta-Thalassaemia and School

Download a short brochure which is useful for both teachers and parents ..  download

5 - ThaliMe - Mobile App & Community

The first mobile app that connects you to other Thalassemia patients and families who know what you’re going through. Easily access the information, advice and health tracking tools you need to manage your health. Get support from others just like you. Click here for video demonstration.

6 - Tips to Stress Less

Stress Less Tips is an initiative of WayAhead - Mental Health Association NSW. 10 easy-to-do 'Tips to Stress Less' are developed each year to help support mental health and good wellbeing ... More info

7 - Parenting and Thalassaemia

7.1 - Parents managing Thalassaemia: A short leaflet with helpful information for parents when managing a growing child with thlassaemia major or sickle cell anaemia ... download

7.2 - My Baby has Thalassaemia: A detailed booklet from UK Thalassaemai Society and Uk Genetics Alliance ... download

7.3 - Fertility and Pregnancy in Thalassaemia: brochure from CAF (Cooleys Anemia Foundation) ... download

7.4 - Managing the health of your child: Routine investigations in the management of thalassaemia - an overview from UK Thalassaemia Society (UKTS)


8  - Books & Resources

8a - Kids & Younger Teens

8.1 - Jumo Health & the MediKidz comics:  It all started when two compassionate medical professionals wanted to alleviate the anxiety that often accompanies a diagnosis. Born to empower children living with medical conditions through comic books and superheroes, today Jumo provides a suite of resources for children and families in print and digital formats, using videos, podcasts and games. ... Visit JumoHealth and JumoConnect

8.2 - Medikidz Explain Thalassaemia: What's up with Haaris? and Medikidz Explain Sickle Cell Disease: What's up with Casey? ... available through online bookshops.

8.3 - All about Thalassaemia children's book from TIF - Thalassaemia International Federation ... View online or  download

        Also available in Arabic, Mandarin, Bengali, Spanish, Turkish, Malay,  and other languages ...  visit TIF website

8.4 - CAF Children's Storybook: A book developed by Craig Butler, CAF's Director for Communications. Craig believes in the power of stories and these stories hold lessons for chidlren with thalassaemia ... download 

8.5 - Iron Warriors Newsletter: Older newsletter with some nice stories, activties and puzzles ... download ... (See above for new interactive website) 

8.6 - List of books for Children with Chornic conditions: (downloadable pdf coming soon) 

8.7 - Cyber Safety: Resources from eSafety Commissioner:   Classroom Resources   -   iParent    -   Cyber Detectives video

8b - Older Teens

8.8 -  Managing Fatigue: A handy booklet from the members of the IDFA (Immune Deficiencies Foundation of Australia). A great organisaiton with whom we work. Download: Managing Fatigue

8.9 -  Spewin' - Streetwise Comic:  An oldie but a goodie ... two zines or comic book stories about teens living with genetic disorders.These were free communtiy comics, but are no longer published.

  •  Thalassaemia Comic: Too Much Pressure  ... download
  •  Cystic Fibrosis Comic: Tara Vet Surgeon ... download

8.10 -  Livewire: When you’re a teen living with a serious or chronic illness, or a disability, it can be hard – and let’s face it, sometimes people just won’t get what you are dealing with! Livewire: is a place for people like you. Whether you are from Australia or New Zealand, it’s a place you can make friends, share stories, laugh, have a vent, and just be yourself… whatever kind of day you’re having! Visit:  Livewire

8.11 - Donate Blood: Student and Schools Info & Resources from the Australian Red Cross Blood Donation Services.

8.12 - Bitesize Health Messsges & reminders from CAF:  Following your Treatments - Pays Off& She has Thalassaemia & still Runs half marathons For more Health Information visit CAF website.

8.13 - Iron Warriors Education Video - Iron and Adherence:  This video explains the build-up of iron in the human body and how iron interacts with cells and systems in our body. Its aim is to help patients understand the importance of daily adherence to their chelation therapy. View Video


9 - Personal Stories

9a - One Patient's Story: Living with and Learning from Thalassemia by Aaron Cheng

2010: High school student Aaron Cheng shares a speech about thalassemia which he recently delivered to his classmates.  We share this inspiring testimony with you. Provided by Cooley's Anemia Foundation: (CAF). Read here

9b - Robert - living with thalassaemia

2017: Robert credits his parents with the strength he came to eventually develop in himself to manage his condition. “Robert envisions his young parents at the time, struggling to learn all they could about a blood disorder as rare as thalassemia and determining how to find the right care for their son. Ultimately, Robert was fortunate to be seen by the same pediatric hematologist from age 4 to age 22, when he transitioned to a clinic that specializes in the diagnosis and treatment of adults with blood disorders.

Robert credits this consistent, outstanding care with making a vital difference in his life. His pediatric hematologist always encouraged him to ask questions about his condition. “The opportunity to question things led me to better understand thalassemia. This ultimately led to my interest in choosing science as a field of study.” Now 25 years old, Robert is studying in a biomedical engineering PhD program that is a joint initiative between the Georgia Institute of Technology and Emory University. Read here

Go to top