Items tagged 'Rare bleeding disorders'

Being rare

Adam, Bel and Tayla -
26 March 2025

Boys, Girls, Growing up with a bleeding disorder, Personal stories, Rare bleeding disorders, Young people
haemophilia, rare clotting factor deficiencies, VWD, Youth

Adam, Bel and Tayla share their experiences of growing up with a very rare bleeding disorder and what they learned along the way.

Rare Disease Day 2025

26 March 2025

Rare Disease Day was celebrated on 28 February 2025 to raise awareness and generate change for people with rare diseases, including rare bleeding disorders.

Rare Disease Day 2025

27 February 2025

28 February is Rare Disease Day – a worldwide event to raise awareness and generate change for people with rare diseases.

Endoscopies – what might I need to know?

Sue Webzell -
11 December 2024

Special considerations with endoscopy, gastroscopy or colonoscopy for people with haemophilia, VWD and other bleeding disorders.

Bleeding Disorders Awareness Month

11 December 2024

In October 2024 we came together to raise awareness about haemophilia, VWD and other rare bleeding disorders.

Parenting a teenager with a rare bleeding disorder

Elizabeth -
11 September 2024

Elizabeth shares her experiences of parenting her teenage daughter Grace who has Glanzmann thrombasthenia, a rare hereditary platelet function disorder.

Acquired haemophilia – Jenny’s story

11 April 2024

Jenny shares her story of how she discovered she had acquired haemophilia and how it was able to be successfully treated with the support of her hospital and Haemophilia Treatment Centre.

About Glanzmann thrombasthenia

19 March 2024

Glanzmann thrombasthenia is a very rare hereditary platelet function disorder that affects the way that platelets work in the body.

Growing up with Glanzmann thrombasthenia

Elizabeth -
19 March 2024

Elizabeth’s teenage daughter Grace has Glanzmann thrombasthenia. Elizabeth talks about what it was like to find that your child has a very rare bleeding disorder and their family experiences as Grace grows up.

Living with Glanzmann thrombasthenia

Allison -
19 March 2024

Allison was diagnosed with Glanzmann thrombasthenia at birth. She talked to HFA about her experiences and what she has learned from living with this very rare bleeding disorder.

Haemophilia Foundation Australia

Created with Heartburst

Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.

Items tagged 'Rare bleeding disorders'

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