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Items tagged 'Rare bleeding disorders'

  • News & Stories

Acquired haemophilia – Jenny’s story

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

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.
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  • National Haemophilia Journal

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.
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  • National Haemophilia Journal

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.
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  • National Haemophilia Journal

Rare Disease Day 2024

  • 19 March 2024
In 2024 Rare Disease Day is celebrated worldwide on 29 February to raise awareness and generate change for people with rare diseases. It is an opportunity to share personal stories and acknowledge the challenges for our community members who live with a rare bleeding disorder.
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  • News & Stories

Growing up with Glanzmann thrombasthenia 

Elizabeth’s teenage daughter Grace has Glanzmann thrombasthenia. Elizabeth spoke with HFA about what it was like to find that your child has a very rare bleeding disorder and their family experiences as Grace grows up.
Read more
  • News & Stories

Living with Glanzmann thrombasthenia 

Allison is in her mid-40s and 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. 
Read more
  • National Haemophilia Journal

Rare bleeding disorders

  • Stephen Matthews -
  • 11 December 2023

STEPHEN MATTHEWS Stephen Matthews is Clinical Nurse Consultant Haemophilia at the Royal Prince Alfred Hospital, Sydney, NSW Rare bleeding disordersChair…

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  • National Haemophilia Journal

Congenital fibrinogen disorders

  • Radha Ramanan -
  • 12 September 2023

RADHA RAMANAN Dr Radha Ramanan is the current Australian Haemophilia Centre Directors’ Organisation (AHCDO) Research Fellow.  Dr Radha Ramanan received…

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  • News & Stories

Living life actively with VWD

Adam is in his late 40s and has Type 3 von Willebrand disease (VWD), which is a severe form. He…

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Haemophilia Foundation Australia

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