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