Resources and Publications

ASCIA HAE Position Paper

The Australasian Society of Clinical Immunology and Allergy, ASCIA, is the peak professional body of Clinical Immunology and Allergy Specialists in Australia and New Zealand. They have prepared a Position Paper on treating hereditary angioedema see Position Paper

ASCIA HAE Action Plan

ASCIA have prepared a treatment Action Plan from the position paper. This provides patients with a framework for individualising their approach to responding to attacks and treatment. see Action Plan

Guidelines for Managing Your Child's HAE at School 

It is with a mix of apprehension and excitement that parents send their child off to school. For parents of children with HAE, there are added concerns about how to approach their child’s school. On this page, you’ll find some materials to help you and the school work together. These are provided only as a general guide, and need to be personalised to reflect your child’s age, needs and situation.

The specific steps for managing your child’s HAE at school should be written up in your child’s HAE Action Plan. The Action Plan should be distributed to every school official who may care for your child. It’s important to have a meeting with the child’s teachers and other school officials to explain your HAE action plan, including your child’s triggers, their severity of HAE, common symptoms and effective treatment procedures.

The school should have a clear understanding of when to call 000 (111 in NZ) You should make sure that your child’s HAE action plan includes your doctor's phone number, your preferred hospital, as well as contact numbers for you, other guardians, and a trusted friend.

The first day of school is a very emotional and busy day for students, teachers and parents. We recommend you create a pack containing this information so that teachers can read it at their leisure. It may be prudent to drop the information in to the school prior to the student’s return. It would be beneficial to present the information in an attractive sleeve or folder, and to include only enough information so the teacher can quickly review it.

Once they have had a chance to read through the information, you should make an appointment to discuss any questions or concerns they may have. 

HAE Australasia has a range of information and brochures available, simply visit our website http://www.haeaustralasia.org.au/ or contact us for assistance. 

The Teacher Documentation Pack should include:

  • A short note introducing yourself and your child to the teacher.
  • A brochure on HAE
  • A copy of your HAE Action Plan
  • A list of  Key Messages about HAE that your child’s teacher should know (see below)

At your Meeting with your Child's Teacher:

  • Explain your child’s HAE Action Plan
  • You may wish to describe some of the attacks your child has experienced and possibly share some photographs of swellings
  • Explain this condition is distinct from anaphylaxis and adrenaline (Epipen) has no role in the management of HAE attacks.
  • You should mention that on occasions some physical activities may not always be comfortable for your child.
  • Make arrangements for alternative homework options during periods that your child is unable to attend school
  • You may also want to discuss the school policy on relief teachers and ensuring they also receive this vital information

Key Messages for the Teacher about HAE

  • My child has a rare blood disorder and can experience episodes of internal or external swelling – often without warning. Swelling can occur anywhere in the body.
  • My child has a ‘HAE Action Plan’ – this should be visible and followed at all times.
  • Many people with HAE experience swelling in their throat that is life-threatening. If my child reports a thickness in his/her throat, has trouble breathing or has a hoarse voice – please contact 000 immediately. Please also contact one of the emergency family member numbers below. 
  • Swelling often results from trauma, such as a bad fall or bump. I have notified their physical education teacher and I also ask for your assistance in monitoring any trauma-related swelling.
  • My child is aware of his/her condition and how it affects them – however, please don’t hesitate to contact me if he/she is not asking for help and you feel that medical attention is required.
  • My child may or may not wish to discuss his/her condition with their classmates, please talk with my child about their concerns. 
  • For more information, please visit www.haeaustralasia.org.au or contact me.

To view a sample Teacher Note see Teacher Note

 

 

Publications

  • ASCIA Position Paper - Hereditary Angioedema see Position Paper
  • ASCIA Hereditary Angioedema (HAE) Action Plan see Action Plan
  • Medical Alert Tags see Tags
  • HAE Global Conference – Copenhagen 17-20 May 2012 (Video) see Global Conference
  • That’s Life! Magazine - “Pregnancy Made My Face Swell” by Amanda Tionisio • 2012-09-12 (Article) see Pregnancy Made My Face Swell
  • Medication Access Denied (SunriseOn7)  2012-03-09 (Video) Access Denied
  • Frankly Speaking – “One should judge a society by how it looks after the sick and vulnerable” part tahi  2013-03-04 (Article) see Frankly Speaking
  • Take Five Magazine 2015-11-12 Treasuring the Good Days Tania Bogoyovich's story.

Submissions

​HAE Australasia Ltd Pre-Budget Submission for the Australian Federal Budget 2015/2016  

HAE Australasia Ltd Pre-Budget Submission for the Australian Federal Budget 2016/2017                                                       

 

Surveys

Quality of Life Survey, Prof Connie Katelaris, UWS. Survey 2015

Useful links

These links will take you to sites outside of HAE Australasia Ltd.’s website. HAE Australasia is not endorsing any of the links or their related organisations. HAE Australasia takes no responsibility for information contained on these websites.