On The Pulse at the WFH 2018 World Congress in Glasgow

‘WFH Youth Workshop’

When: Sunday 20 May, 14:30-17:00
Chair: Antonio Almeida, Programs Director, WFH

Empowering youth to engage and take an active role in advocating for their bleeding disorder is paramount in trying to effect local and international policy change in the context of young people’s experiences. This 3- ½ hour workshop on the opening day speaks volumes of its importance and to nurturing long-term commitment in the community.

‘What is your Everest? Encountering barriers but seeing opportunities’

When: Monday 21 May, 10:15-11:45
Chair: Dan Farthing-Sykes, CEO, Haemophilia Scotland

Treatment advances and increased availability have enabled the likes of Chris Bombardier (pictured) and Alex Dowsett to push the boundaries of what was ever thought possible living with severe haemophilia. Yet, this ‘success’ in life can come in many forms and individuals in the community are achieving amazing feats in their own right. This panel discussion will hopefully encourage all of us to do more!

‘Emerging therapies: Global perspectives’

When: Monday 21 May, 16:30-18:00
Chair: Alok Srivastava, Department of Hematology, Christian Medical College, Vellore, India

Progress means different things to different people. With a growing portfolio of haemophilia treatment options either available now or coming to market, this session will attempt to address the issue of access in terms of cost and technology. It will further consider new models to enable treatment to become more readily available where there is currently limited to no access.

‘Nurse and physio-led clinics: Is it the future?’

When: Tuesday 22 May, 14:15-15:45
Chair: Marlène Beijlevelt, Haemophilia and Research Nurse Consultant, Academic Medical Center, Amsterdam, Netherlands (pictured)

As healthcare delivery evolves across the world and struggles to cope with unprecedented demand for services with increasing cost, could nurse and physio-led clinics be the solution? A top panel will seek to address the benefits and challenges of providing excellent and innovative haemophilia care in this way.

‘Voices of women: New challenges, different visions’

When: Tuesday 22 May, 16:30-18:00
Chair: Dr. Claire McLintock, Senior Lecturer and Obstetric Physician, Department of Obstetrics and Gynaecology, University of Auckland Medical School, Auckland, Australia

While women are rarely affected by haemophilia, they are equally as likely as men to have other bleeding disorders. These can bring about unique issues and consequences at every life stage, creating the need for increased education and awareness. This session will explore the perspectives of female patients, family members and healthcare professionals.

‘Whose haemophilia is it? Guiding children and teens with haemophilia’

When: Wednesday 23 May, 10:15-11:45
Chair: Silvina Graña, Clinical Psychologist, Foundation of Hemophilia in Argentina

It is critical that children and adolescents with haemophilia learn how to take care of themselves and to reduce the risk of bleeds. Accordingly, healthcare teams should be creative and open‐minded as much as possible when helping them and their families during the adolescent transition. An expert panel will shed light on how to share models of intervention in psycho‐educational areas, using both medical and nursing approaches.

‘Forward-thinking patient organisations’

When: Wednesday 23 May, 16:30-18:00
Chair: Brian O’Mahony, President, European Haemophilia Consortium

Patient groups and organisations around the globe undertake invaluable work to help bring benefit to people living with bleeding disorders. With over 36 years of experience in haemophilia advocacy, Brian O’Mahony (pictured) will lead this session on creating a culture within national member organisations (NMO) of constant improvement and innovation to advance levels of care.

For further details and to view the full programme, click here.