WFH NETWORK

Program details

 

  • MEDICAL
  • MULTID.
  • DENTAL
  • LAB
  • MSK
  • NURSING
  • PSYSOC
  • WFH

BLEEDING DISORDERS IN THE GENOMICS ERA

CHAIR: MARIJKE VAN DEN BERG

Topics and speakers:
The additional value of genotyping to establish a correct diagnosis – Johannes Oldenberg
Genome-wide analysis in the diagnosis of rare bleeding disorders – Willem Ouwehand
Genotypes, phenotypes, and whole genome sequencing – Barbara Konkle

Summary: Genotyping of hemophilia and other inherited bleeding disorders has proven to be of great value. In the first decades after the introduction of genotyping, the procedure’s high costs made it prohibitive to use on a large scale. Newer techniques of genotyping have greatly improved sensitivity and have made a correct diagnosis possible in 98% of the patients. Also, genotyping costs have been reduced greatly, allowing the procedure to be adopted as a standard of care. In this session, overviews will be presented on the use of genotyping in improving our understanding of the biology of the disease.


EMERGING THERAPIES: GLOBAL PERSPECTIVES
CHAIR: ALOK SRIVASTAVA

Topics and speakers:
EHL products – Johnny Mahlangu
Non-clotting factor options – Monica Cerqueira
Gene therapy – Alok Srivastava

Summary: This session will aim to present the emerging therapies for hemophilia from a global perspective—contrasting them with the current thrust on building programs for early prophylaxis using conventional products and their inherent challenges. The session will also cover emerging models which offer newer options. Speakers will attempt to address the issue of access in terms of cost and technology. They will also look at models that allow treatment to become available to a much larger number of PWH. The impact of wider access to hemophilia care in the world will also be discussed.


GENE THERAPY - CURRENT CHALLENGES
CHAIR: THIERRY VAN DEN DRIESSCHE

Topics and speakers:
Assessment of AAV ab: Patient selection – Barry Byrne
Lentivirus – TBC
Gene editing – Mark Key

Summary: This session focuses on addressing some of the current challenges in gene therapy for hemophilia-based on adeno-associated and lentiviral vectors. Some of the questions addressed will include the following: What are the immune challenges currently faced by AAV vectors, and how can these challenges be overcome? How can we improve the safety profile of lentiviral vectors with respect to the potential risks associated with stable genomic integration? Is gene editing ultimately going to replace more conventional gene therapy strategies?


GENE THERAPY - MEASURING BENEFIT AND DEFINING RISK
CHAIR: EDWARD TUDDENHAM

Topics and speakers:
Technology risk assessment of present and future AAV vectors – Glenn Pierce
EMA regulators approach to gene therapy – TBC
Defining outcomes post gene therapy – Alfonso Iorio

Summary: This medical session will focus on breakthrough advancements in gene therapy for hemophilia. Over the past 2 years, therapeutic circulating levels of factor VIII and factor IX have been achieved in clinical trials using adeno-associated viral (AAV) vectors to deliver coagulation factor genes to the liver. The many steps toward using the patient as an in vivo bioreactor to produce coagulation proteins are complex and remain poorly understood, yet some of these therapies are entering pivotal Phase 3 clinical trials.


INHIBITORS: CLINICAL ASPECTS
CHAIR: JAN ASTERMARK

Topics and speakers:
The role of the laboratory in diagnosis and management – Jan Astermark
The predicament of inhibitors in the developing world – Margaret Ozelo
New approaches to tolerance – Henry Daniell

Summary: This session will provide an overview of the developments of assays to screen for and measure inhibitors, focusing on FVIII. Topics discussed will include difficulties in lab measurement, detecting low titre inhibitors, ISTH recommendations on PK in determining inhibitors, and recommendations for PUP and PTP inhibitor screening. Speakers will also provide insight on the challenges of managing hemophilia in the developing world.


JOINT DISEASE
CHAIR: STEVEN PIPE

Topics and speakers:
New insights in pathogenesis of joint disease – Liza Van Vulpen
Medical management of pain and function – TBC
Role of imaging in the assessment and management of hemophilic arthropathy - Carlos Martinoli

Summary: Joint disease is the most prominent problem for patients with hemophilia. Joint bleedings lead to disability even after prophylactic therapy has been introduced. New insights into the pathogenetic mechanism of joint disease might lead to new therapies for patients. Speakers will present new data on the development of joint disease and whether the evolution of joint disease can be reduced after bleedings. Correlation between pain and the neurological system as well as the shared neuro-anatomical networks between physical and psychic suffering will also be discussed.


PROPHYLAXIS: GLOBAL MODELS OF LOW DOSE PROPHYLAXIS
CHAIR: JOHNNY MAHLANGU

Topics and speakers:
Experience with prophylaxis in China – Runhui Wu
Experience with prophylaxis in Tunesia – Emna Goulder
Experience with prophylaxis in India – Shashikant Apte

Summary: Prophylaxis is now the accepted standard of care for prevention of bleeding in people with bleeding disorders. It is, however, very expensive and therefore remains beyond reach for many patients—in particular those living with limited resources. This financial barrier to prophylaxis has prompted exploration of alternative regimens such as low-dose prophylaxis. The experience with low-dose prophylaxis is growing, with a number of developing countries reporting on their exploratory use and experience. This session will explore the use of low-dose prophylaxis in three developing countries.


RARE BLEEDING DISORDERS
CHAIR: GERALD DOLAN

Topics and speakers:
Overview of clinical assessment and diagnosis – Flora Peyvandi
Yin and Yang of bleeding and thrombosis – Thomas Renne
Factor XI deficiency genotype, phenotype and management – Gillian Gidley

Summary: Rare bleeding disorders often receive less attention than hemophilia A, B and von Willebrand disease. This session aims to explore some aspects of these conditions. The discussion will cover an overview of the prevalence and challenges in diagnosis. Clinical assessment of the bleeding phenotype and how the classification of severity may differ from hemophilia A and B will be discussed as well. Healthcare professionals will also be interested to know that an overview of therapies available and the potential prospects of gene therapy will be covered.


VON WILLEBRAND DISEASE: CLINICAL CONUNDRUMS
CHAIR: DAVID LILLICRAP

Topics and speakers:
Overview: Current approaches to diagnosis and treatment – Frank Leebeek
New biological insights in Von Willebrand disease – Anna Randi
Von Willebrand disease and the vascular membrane – Sophie Susen

Summary: Advances in the knowledge of von Willebrand Disease (VWD)—and the way we care for people with the disease—continue to evolve. As an example, a recombinant concentrate will become available for patients with VWD eventually, more than two decades after recombinant concentrate for patients with hemophilia A and B became available. Improvements are expected to help us clarify the type of patients who would benefit from prophylactic treatment, more efficiently treat severe bleeds, and enhance educational programs. Improvements will also see an increase in participation from multidisciplinary teams—something which happens less frequently with in VWD compared to hemophilia.


WOMEN WITH BLEEDING DISORDERS
CO-CHAIRS: ROSALINE D’ORION & MARGARET OZELO

Topics and speakers:
Evolution of care for women in families with hemophilia – Cedric Hermans
Pregnancy in Von Willebrand disease and rare factor deficiencies – Roshni Kulkarni
Platelet disorders in women – TBC

Summary: Diagnoses of the genetic status and assessments of potential factor deficiency in carriers are performed more easily today than in the past. However, delays in providing those diagnosis are often reported despite the increased availability of genetic techniques and the improved awareness that carriers may have bleeding experiences. This session will review the current knowledge in the field and describe the evolution of practice, the unmet needs in the community, and the options for both girls and women in families with hemophilia. The clinical and laboratory characteristics among women with Von Willebrand Disease and Rare Factor Deficiencies during pregnancy as well as the recommendation for these women in preparation and after the delivery will also be addressed.

 

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A BLEED OR NOT A BLEED…THAT IS THE QUESTION.
CHAIR: PAMELA NARAYAN
 
Topics and speakers:
How my joint feels – Radoslaw Kaczmarek and Mark Dwyer
Current and future management: Clinical assessment – Karen Strike
Current and future management: Patient reporting outcomes - Brian Feldman

Summary: What is an acute joint or muscle bleed? How is this different from an acute on chronic bleed? What are the differences in presentation of these two entities? Every swelling around a joint is not a bleed—particularly in those who suffer from established joint disease. This session will attempt to answer these questions and include a patient perspective talk on how they experience the symptoms. A discussion on the qualitative aspect of the pain and discomfort perceived by the patient will be useful to help clinicians distinguish these clinical presentations.


CAN’T OR WON’T PAY: HEALTH ECONOMICS AND BLEEDING DISORDERS
CHAIR: DEON YORK

Topics and speakers:
Overview of approaches to HTA in Europe, the USA and elsewhere: implications for patient access to current and future hemophilia treatments – Mark Skinner
HTA: a global example? – Jamie O’Hara
PARTNERS (Provision of Affordable Replacement Therapy, Network of European Relevant Stakeholders) – Brian O’Mahony
Panel discussion: The value and cost of gene therapy – David Page, Karen Fassey and John Pasi

Summary: The objectives and key take-home messages of this session are to provide an overview of health economics concepts and the implications for the funding of bleeding-disorder care. Attendees will learn about the EHC approach to ensuring sustainable cost for factor replacement therapy.Speakers will also provide insight into how health technology assessment operates and what we should be preparing today to address future access and reimbursement challenges. Finally, this session will explore the value and cost of gene therapy, going over different concepts, including HTA and other collaborative approaches.


CARING FOR CARERS (HOW DO NMOs TAKE CARE OF THE CARERS OF OUR PWH)
CHAIR: PAMELA WILTON

Topics and speakers:
Women's carers: hear their voices, help them, answer their needs – Yannick Collé
Identifying obstacles and providing support for caregivers across cultures – Peg Geary
Support pilot: a psychologist's perspective – Grainne O’Brien
Partner or parent of PWH – Tatjana Markovic

Summary: The objective of this session is to help recognize the need to care for the carers and raise awareness on the importance of the duty of NMOs. Issues such as coping with the stigma of being identified as a carrier, as well as the development of programs addressing the needs of people taking care of patients will be addressed throughout the session.


CHILD TO TEEN, WHAT DOES IT MEAN? TEENAGERS TAKING RESPONSIBILITIES
CHAIR: GRAEME TING

Topics and speakers:
Nurses model for transition between pediatric and adult services – Brittany Savage
Psychological model for transition between pediatric and adult services – Natalia Arroyave
Pediatric to adult dental care: an example of transitional service change – Kristen Fitzgerald
A youth patient perspective – Cesar Nicolas Rossi

Summary: This session will explore how healthcare providers, patients, families and caregivers can work together to offer teens a smooth pathway from child to adolescent and adult services. It will look at strategies, facilitators and inhibitors to smooth changes of service, while highlighting the benefits to patients of changing clinical settings and providers. We will find out why such service changes are necessary and how treatments and care are optimized while maintaining good communication, trust, rapport and allowing special relationships to continue to develop and grow for the benefit of the patient and their support network.


CONTINUITY IN QUALITY OF LIFE: LESSONS LEARNED BY EXPERIENCED TREATERS
CHAIR: PAUL MCLAUGHLIN

Topics and speakers:
The elephant in the room… the things we don’t always ask but should – Pamela Narayan
Hematologist: I could have done it differently – Maria-Eve Mingot-Castellano
Together the risk is worth it – Debra Pollard
The patient perspective: What they told me, what I actually did – Andrew Selvaggi

Summary: All too often only positive stories and outcomes are presented to peers and patients at conferences. We all know that clinical practice is a rich and varied storyboard of individual approaches, personalities, patients and lifestyles. This session aims to present some difficulties identified by experienced treaters and patients, explain how they felt about them at the time, and reflect on their decision-making process chosen to address the issue.


FORWARD-THINKING PATIENT ORGANIZATIONS
CHAIR: BRIAN O’MAHONY

Topics and speakers:
Twinning dynamics: A developing country’s transition from being a "student twin" to a "teacher twin" – Bradley Rayner
Improving care through advocacy and strategic partnerships: Lessons from the world’s largest democracy – Vikash Goyal
Blood relatives: Cycling to Stavanger – Getting on the map: Recognition and fundraising - Evelyn Grimberg
Planning and initiating projects – Engels Rolando Reyes Sanchez
Fundraising and negotiation in today’s economy – Deon York

Summary: Speakers will address the importance of developing a culture within the NMO of constant improvement and innovation to advance the level of care for people with bleeding disorders. This session hopes to serve as a catalyst for NMO growth and development. It will cover the milestones achieved by the organizations through capacity‐building, the reduction of stigma and discrimination through awareness raising, and the development of the National Patient Registries.


INTIMACY AND SELF-ESTEEM
CHAIR: LISA THOMAS

Topics and speakers:
Overview – Lisa Thomas
Adapting your lifestyle: Physical difficulties and barriers – Greig Blamey
Understanding and managing fears in relationships and sexuality – Frederica Cassis
Increasing intimacy in relationships – Woet Gianotten

Summary: Strategies for communicating with a partner about having a bleeding disorder, reducing fear and anxiety and increasing intimacy and communication in your relationship are topics that will be discussed during this session. Speakers will discuss how to address your bleeding disorder and integrate it into intimacy. Bleeding disorders do not need to be an impediment to a full and happy relationship.


NURSE AND PHYSIO-LED CLINICS: IS IT THE FUTURE?
CHAIR: MARLENE BEIJLEVELT

Topics and speakers:
What should a hemophilia clinic offer its patients? – Katrien de Rooij
Challenges of a multidisciplinary clinic - Wypke de Boer
Nurse and physio–led clinics: How can this run well? - TBC
How can we collect outcomes data with minimal burden to our patients? – David Stephensen

Summary: Why is there a need for nurse and physio-led clinics? How can they run well? Who ultimately benefits? These questions will be addressed during the session to show how nurse and physio-led clinics can be beneficial for patients and commissioners, in addition to being cost effective.


PRACTICAL APPROACHES OF GENETIC AND GENOMIC TESTING
CHAIR: KEITH GOMEZ

Topics and speakers:
Teachable moments: Complexities and approaches of integrating genetics into your practice for improved patient care – Michelle Albek
Genetic testing for bleeding disorders: Testing strategies and techniques – Kate Downes
Incorporating genetic testing into comprehensive care for bleeding disorders – Cedric Hermans

Summary: This session will provide attendees with the opportunity to expand their knowledge and comfort level with complex genetic concepts by using real cases examples as teachable moments to illustrate issues ranging from inaccurate historical diagnosis to the delivery of unanticipated or ambiguous test results. Genetic testing for bleeding disorders can play an integral role in diagnosis, medical management and familial risk assessment. Understanding which molecular test is most appropriate, why limitations of available testing matter and how results are interpreted will maximize the utility of genetic/genomic testing for patients and providers.


TOGETHER WE CAN DO MORE: STICKING TO THE PROGRAM
CHAIR: SUSAN CUTTER

Topics and speakers:
Psychosocial strategies: Access, adherence and attitude – Susan Cutter
Benefits vs. can I be bothered? – Lyndsay Hughes
The complexities of good compliance – Koula Asimakopoulou
The patient's preference – James Kago

Summary: The success of evidence-based, precise, personalized health interventions often relies on compliance and adherence to medical, dental, exercise-related and personal mental health-related well-being protocols. These protocols, while recognized as essential, can become arduous and sometimes distressing for patients, families and caregivers over time, leading to non-compliance, failed or less effective treatment and potentially resource wastage. This session will explore how healthcare providers, patients, families and caregivers can each communicate their complex issues.
 

TREATING AND BLEEDING: HEALTHCARE PROFESSIONALS LIVING WITH A BLEEDING DISORDERS
CHAIR: TBC

Topics and speakers:
Physician with VWD – Susan Halimeh
Physiotherapist – Gaetan Duport
Nurse – Shaun Emmitt
Psychosocial perspective – Tony Roberts

Summary: Would the person living with a bleeding disorder be in safer hands if their treater also had a bleeding disorder?  Does the understanding and empathy towards their patients decrease or increase?  Do the healthcare professionals practice what they preach to their patients? Is it harder being a patient without medical training? This session will explore the strengths and weaknesses of the relationship between the healthcare professional and their patient. It sheds light on the particular situation when both the patient and the treater live with a bleeding disorder.


VOICES OF WOMEN: NEW CHALLENGES, DIFFERENT VISIONS
CHAIR: CLAIRE MCCLINTOCK

Topics and speakers:
Woman with bleeding disorder – Joana Banquero
Mother of child with a bleeding disorder – TBC
Hematologist perspective – Paula James
Psychosocial perspective – Richa Mohan

Summary: The objective of the session is to better understand the issues of women with bleeding disorders. New challenges are constantly arising for women in the bleeding disorders community. Speakers will explore the physical, social and emotional challenges that women with bleeding disorders face in their day to day lives. Perspectives from patients, family members and healthcare professionals will be included in this talk.


WHAT IS YOUR EVEREST? - ENCOUNTERING BARRIERS BUT SEEING OPPORTUNITIES
CHAIR: DAN FARTHING-SYKES

Topics and speakers:
Self – Louis Marlow
Family – Megan Adediran
Community – Asraf Caunhye
Care delivery – Aye Aye Khaing

Summary: Treatment advances and increased availability for many patients have allowed people with hemophilia to do previously unthinkable things – such as climb the world’s highest mountain or be a world class athlete. However, success in life is measured by more than physical accomplishments. People with hemophilia, WFH national member organizations, and healthcare providers all face unique personal challenges. Many are achieving great things for themselves, their communities and their patients - often with little more than the drive to succeed and the wish to make something better. These stories will inspire others to reflect on their situations and ask themselves “What can I do?”


WHEN WILL TECHNOLOGY REVOLUTIONIZE CARE?
CHAIR: REESHEN PILLAY

Topics and speakers:
A tour of online resources and how to use them – Reeshen Pillay
Precision, personalized, patient care: The Irish experience – Declan Noone
Realizing goals through effective social media campaigns – Shelly Reed
The benefits of Online Patient Communities – Milena Pirnat

Summary: What kind of resources are available to assist people with bleeding disorders and national member organizations (NMOs) for both general and specific problems? This session will explore ways to leverage the advantages of our digitally‐connected world to help solve some of the challenges related to bleeding disorders. Many solutions to the challenges faced by the bleeding disorders community are now more accessible than ever, with even more coming down the pipeline. Discover how to find and navigate through the vast collection of valuable resources offered by the WFH and other sources.


WHOSE HEMOPHILIA IS IT? - GUIDING CHILDREN AND TEENS WITH HEMOPHILIA
CHAIR: SILVINA GRAÑA

Topics and speakers:
Empowering children and teens: a whole family approach – Nicola Dunn
Transitions: From childhood to adolescence – Sonia Laguna Chamizo
Hemophilia camps: more than just entertainment – James Munn
The art of accompanying – Cecilia Miserere

Summary: Comprehensive treatment in children and adolescents is the key to their healthy growth. Playing and learning spaces for children and adolescents with a bleeding disorder will lead to greater autonomy and healthy development, and thus better overall wellbeing. As a patient’s health team, practitioners should be creative and open‐minded as much as possible when helping families and children with the transition to adolescence. The objective of this session is to recognize the situation that children with bleeding disorders are facing in developed and developing countries. This will shed light on how to share models of intervention in psycho‐educational areas, using both medical and nursing approaches.



ASK THE EXPERTS: MANAGEMENT OF BLEEDING IN THE MOUTH - TIPS AND TRICKS

 
Topics:
Hematologist
Dentist
Nurse
Patient

 

FREE PAPERS

Available in February 2018

 

MANAGEMENT WITH INHIBITORS

In development - Available January 2018

 

WOMEN AND RARE BLEEDING DISORDERS

In development - Available January 2018

 


 

Speakers TBC




CURRENT AND FUTURE LABORATORY ISSUES

 
Topics:
Pediatric haemostasis: what is normal?
Current issues in FVIII inhibitor testing
Diagnosis of VWD - whch activity assays to use?

CURRENT LABORATORY ISSUES IN GENETICS ANALYSIS

 

Topics:
Diagnosis of inherited bleedign disorders in the genomic era
Genotype versus Phenotype in VWD diagnosis
Genetic analysis of hameophilia carrier status

 

EXTENDED HALF LIFE AND NOVEL PRODUCTS: LABORATORY ISSUES

 
Topics:
Potency labelling: How is it done and why does it matter?
Monitoring EHL FVIII
Monitoring EHL Factor IX

ROLE OF CHROMOGENIC ASSAYS IN HEMOPHILIA DIAGNOSIS

 

Topics:
Role of chromogenic FVIII assays in Diagnosis
Role of chromogenic FIX assays in Diagnosis
How to set up chromogenic FVIII and FIX assays

 

 
 
Speakers TBC

 




A CHILD IS NOT A SMALL ADULT

 

Topics:
Clinical assessment: how to improve it?
US: how to use it?
Sport or not?
Surgery: is the last option?

 

CONSULTATION CORNER

 
Topics:
Hematologist
Physiotherapist
Physiatrist
Surgeon

 

MILD HEMOPHILIA

 

Topics:
When to call?

When to assess?

How to manage?

 

OUTCOME MEASURES

 
Topics:
Hematologist perspective
A global perspective
Surgeon perspective

 

PROGRESS OF JOINT ARTHROPATHY: CRADLE TO GRAVE

 
Topics:
Teen
Adult
Elder

 

RAPID FIRE PRESENTATIONS

In development - Available January 2018

 

SPORTS AND EXERCISE

 

Topics:
Advanced exercise: Is it advisable?
Feeling better: Psychosocial perspective
Sport: how to choose?
A revolutionary experience

 

SYNOVITIS RE-VISITED

 

Topics:
The place of ultrasound

Classification and difficulties of assessment

Pitfalls



Speakers TBC




CARING FOR CARERS

 

Topics:
Caring for parents of children with bleeding disorders
Helping families with decesion making
Caring for elderly caregivers
Caring for hemophilia nurses

 

INHIBITOR MANAGEMENT

 
Topics:
Starting at the inhibitor diagnosis
Waiting for level of 10Bu
New treatments = no inhibitors: no need for ITI

MANAGING COMORBIDITIES

 
Topics:
Obesity
Long term issues of cerebral bleeding in a person with severe haemophilia
Pain
Hemophilia and a 2nd genetic condition

 

NEW MEDICAL KNOWLEDGE CHANGING NURSING PRACTICE

 

Topics:
Plasma derived FVIII for all PUP's: South African experience
The high risk African-American experience
Using new recombinant molecules: Is the risk moderated
Sub Cutaneous therapies

 

Speakers TBC

 





ALL IN THE SAME BOAT: SIBLINGS AND RELATIVES FACING HEMOPHILIA

 

Topics:
Voices of siblings
Cultural nuances
Working with the entire family

 

IMPACT OF HEMOPHILIA ON RELATIONSHIPS

 
Topics:
Hero B study results: Impact of Hemophilia B on relationships for adults and children
Managing towards healthy relationships
Power of vunerability

MANAGING SEXUAL IDENTITY

 

Topics:
Communication
Approaches in different cultures
Strategies for intervention

SUPPORT FOR MEN AND WOMEN WITH BLEEDING DISORDERS: TRENDS IN DEVELOPED AND DEVELOPING COUNTRIES

 

Topics:
USA perspective
South African perspective
Netherland perspective
India perspective
Oceania perspective

 

Speakers TBC  





IN DEVELOPMENT

Available in February 2018




The WFH 2018 World Congress is supported by the Glasgow City
Council and VisitScotland

© World Federation of Hemophilia