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Abstracts & Presentations

Conference Program (06/10/19)
Abstracts & Handbook 

Friday 11 October 2019
Plenary 1: Improving outcomes – what has been achieved in the treatment of bleeding disorders?
Chair: Dr Liane Khoo 
Introduction and current treatments ~ Dr Liane Khoo
Personal Experience ~ Dr Simon McRae and John
Optimising patient care through PK analysis (WAPPS) ~ Prof Alfonso Iorio

Concurrent 1 
Addressing the challenges of inhibitors 

Chair:  Megan Walsh
A clinical overview ~ Dr Huyen Tran
Discussion and debate on immune tolerance induction therapy ~ Dr Chris Barnes and Dr Julie Curtin 
Personal journey ~ Andrew 

Concurrent 2
Getting older 

Chair: Frankie Mullen 
Emerging clinical issues ~ Dr Liane Khoo
Patient voices: quotes from needs assessment ~ Preetha Jayaram  
Growing older with your HTC ~ Penny McCarthy 
Maintaining independence and keeping up with exercise ~ Greig Blamey 
Innovative projects in ageing ~ Marcia Fearn 

Concurrent 3
Looking after children who have a bleeding disorder

Chair: Robyn Shoemark
Encouraging independence and overcoming barriers to self-infusion ~ Robyn Shoemark
Psychosocial issues for parents and families with a child with a chronic illness ~ Dr Emma Prowse
Transition and personal perspective – Anne Jackson & Patrick 
When can I play again? Q&A on physiotherapy issues, joint health and sport ~ Alison Morris and Johanna Newsom

Concurrent 1
360° on clinical trials

Chair: Dr Tina Carter
The role of your doctor in a clinical trial ~ Dr Simon Brown
The role of nurses in trials ~ Stephen Mathews
A family’s experience of a clinical trial for children ~ Alicia
An individual’s experience of a clinical trial ~ Hamish
Patient reported outcomes to improve the value of clinical trials in haemophilia (PROBE) ~ Dr Alfonso Iorio 

Concurrent 2
Reproduction and family planning

Chair: Jaime Chase
Personal Stories
•    Kara 
•    Pierrta 
A joint presentation on reproduction and family planning
•    A/Prof Kristi Jones ~ Geneticist 
•    Lucy Kevin ~ Genetics Counsellor

Concurrent 3
A healthy life for all ages

Chair: Beryl Zeissink 
Managing a healthy diet and weight ~ Jules Aitken
Exercising safely at all ages ~ Greig Blamey
Personal experience of managing haemophilia challenges and keeping fit and well ~ Tim

Plenary 2 – Dr Happy (Dr Tim Sharp) presentation
Chair: Dan Credazzi
Dr Tim Sharp is Australia’s very own ‘Dr Happy’, at the forefront of the positive psychology movement as founder of The Happiness Institute. 

Saturday 12 October 2019
Plenary 3 Musculoskeletal challenges: joint care and treatment 
Chair: Abi Polus                           
The importance of upper limb care throughout life ~ Greig Blamey
The Utility of Ultrasound in the evaluation and management of Haemophilic Arthritis ~ Dr Rob Russo
Surgical options ~ Dr Mark Horsley

Concurrent 1 
Gene therapy de-mystified 

Chair: Dr Susan Russell
The basic science of blood clotting and how this interacts with new therapies ~ Dr Yvonne Brennan
Through the Looking Glass into the World of Gene Therapy and Non-Factor Therapies ~ Dr Julie Curtin

Concurrent 2 
From girls to women
Chair: Susan Dalkie
Personal story: self-management, diaries, what a parent wants to know ~ Shauna 
Female Factors – issues for different life stages and how to handle them ~ Dr Jenny Curnow
The Gynaecologist and Patients with Bleeding Disorders ~ Dr Kim Mathews
Carriers: What do parents, young girls and women need to know? ~ Joanna McCosker

Concurrent 3 

Chair: Loretta Riley
An interactive workshop:
successful self-advocacy; identifying relevant skills and resources; barriers and overcoming them.
Session to be facilitated by Loretta Riley with Dr Liane Khoo, Nicoletta Crollini and Jane Portnoy

Concurrent 1
Von Willebrand disease and rare bleeding disorders 

Chair: Dr Ritam Prasad
Current issues and VWD – best practice and future treatment ~ Dr Ritam Prasad
 Developing an effective treatment plan ~ Alex Connolly
Personal experience of living with VWD and being a parent of a child with VWD ~ Susie
The rare bleeding disorders ~ Dr Heather Tapp
 Personal experiences of living with a rare factor deficiency ~ 

Concurrent 2 

Chair: Dr Moana Harlen
What’s the risk?
Panel discussion of scenarios, with audience input (Q&A style) – personal decision-making around visiting HTC for a bleed review; gym/sport-related injury; travel, insurance; disclosing – in sport, in relationships; work, challenges of becoming an adult.

•    Young people with bleeding disorders ~ Alan and Sabrina
•    Older person with haemophilia and parent ~ Paul and Shane
•    Health professionals ~ 
•    Greig Blamey, Physiotherapist
•    Jane Portnoy, Psychosocial worker
•    Steve Matthews, Haemophilia Nurse

Concurrent 3
What is comprehensive Care today? 

Chair: Anne Jackson 
Navigating Health Care and Other Systems ~ Loretta Riley
Oral Health and Dental Management of Patients with Bleeding Disorders ~ Dr Suma Sumakura 
Queensland Haemophilia Centre’s experience of Telehealth – engaging with the rural, remote and regional inherited bleeding disorders community ~ Loretta Riley, Amy Finlayson and Dr Jane Mason

Plenary 4 
New opportunities or is the status quo good enough?

Chair: Dr Liane Khoo
What patients want to achieve from treatment – impact of new treatment to a person’s life. From a parent’s point of view ~ Claude Damiani
New Therapies for haemophilia: can we achieve new goals? ~ Prof Alfonso Iorio
Nurse – nursing into the future ~ Robyn Shoemark
What’s involved with getting cutting edge treatment to Australia – understanding and reducing barriers to access ~ Dr Simon McRae
Panel Discussion


Date last reviewed: 31 October 2019

Important Note: This information was developed by Haemophilia Foundation Australia for education and information purposes only and does not replace advice from a treating health professional. Always see your health care provider for assessment and advice about your individual health before taking action or relying on published information. This information may be printed or photocopied for educational purposes.

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