Youth Project & Youth Working Group

As there was little information about the impact of bleeding disorders on young people in Australia, a needs assessment was conducted in 2012 which assisted in better understanding the needs of young people and has created communication and education resources to respond to their needs. This work is ongoing.

The needs assessment led to the development of the following projects and groups:

  • Beyond Prophylaxis youth needs assessment
  • Factored
  • Youth Working Group (YWG)
  • Youth Leadership and Mentoring program
  • Factored In Youth Moderation

Beyond Prophylaxis and Factored In

The aim of the Beyond Prophylaxis project is to enable young people to make positive and informed choices about their lifestyle. The project involves developing an accessible and attractive web site – - as a communication platform that young people will be able to access and connect, share experiences and obtain information about relevant life and life style choices, including work, travel, sport, recreation, relationships and socialising.

Youth Working Group

The Youth Working Group (YWG) is a group of young people affected by bleeding disorders who are involved in the development of HFA’s youth projects. They have played an active part in deciding what the Factored In communication platform will look like and what information it will provide.

The role of the Youth Working Group is currently to assist HFA in the development and redesign of the youth website Factored In.

Youth leadership and mentoring training

Youth were invited to attend the leadership and mentoring training program on the recommendation of State and Territory Foundations.

The aim of the training was to:

  • Provide the skills and knowledge needed to be effective leaders and mentors
  • Widen the network of young people in the bleeding disorders community
  • Learning how to use leadership and mentoring skills on Factored In
  • Equip participants with the capacity to work with their Foundations and prepare a local ‘catch up’ activity.

The training included the following:

  • Sessions with presentations, discussion and activities
  • An evening activity modelling a ‘catch-up’
  • Preparation for a local ‘catch-up’ with the involvement of their local Foundation.

This project has now become the Youth Lead Connect Program. For more information, contact Kassy Drummond -