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Presentations

Transition of patients with thalassaemia and sickle cell disease from paediatric to adult medicine

Key Presentations
• EU Policies in Rare Diseases
• Care of older patients with thalassaemia and sickle cell disease
• Haemoglobinopathies in EuropePrevention and management:Challenges and priorities

Plenary 1
• Antenatal screening experience from England
• Ethical and other challenges in the implementation of national prevention programmes in Europe: the impact of preventing hemoglobinopathies in Western and Northern Europe
• Application of Capillary Electrophoresis to the screening of Haemoglobinopathies

Plenary 2
• Blood transfusion therapyin Thalassaemia Major
• Clinical Management of Thalassaemia - IRON OVERLOAD
• Iron Overload Overview of treatment options
• Deferiprone monotherapy and combination
• Adherence to therapies: health professional's perspective
• ADHERENCE TO TREATMENT - The patient's perspective
• Consistency and Quality of Care
• Total Body Chelation
• Update on survival in thalassaemia

Plenary 3
• Pathophysiology of Sickle Cell Disease
• Management of sickle cell disease in children
• Transition of patients with thalassaemia and sickle cell disease from paediatric to adult medicine
• Chronic viral hepatitis and liver disease in thalassaemia
• The value of Networking in Achieving Common Goals

Plenary 4
• New Scientific Developments - Stem cell and cord blood transplantation in thalassaemia
• Gene therapy for beta-thalassemia
• Gene Therapy Approaches-2
• New Scientific Developments and Alternative Approaches for the Discovery and Characterization of Modifiers of Globin Gene Expression

Workshop 1
• The Regional Hub & Spoke accredited Centers system in Thalassemia Care
• The role of the national and International Patient’s Associations in the quality of care provided to the patients and in patients - national health authorities relationship.
• Patient-centred healthcare
• “REACH THE PATIENT”
• The Role of the Haemoglobinopathy Specialist Nurse
• Social Integration - Fact or Fiction
• The role of National and International Patient Associations

Workshop 2
• European developments in the areas of Expert centres and Registries 1
• European developments in the areas of Expert centres and Registries 2
• The value of patient registers: Example of a register for a rare disease in a Northern European country
• Haemoglobinopathies - Networking of Expert Centres across Europe
• Patients' expectations from expert centres

Workshop 3
• Emergencies in Adults with Sickle Cell Disease
• Risk of severe Haemolytic reactions in Sickle Cell Disease (SCD) and strategies to address them
• The effect of prolonged administration of hydroxyurea in children and adults with sickle cell disease
• Strokes in sickle cell disease: Prevention and treatment
• Pain management
• Self Management of Sickle Cell: (For patients and by patients)

Workshop 4
• Cardiac T2* calibration and relation to prognosis
• Pathophysiology and Management of Thalassaemia Intermedia
• Cardiovascular involvement in Thalassemia Major and Intermedia
• Bone disease in thalassemia
• Monitoring of liver iron with FerriScan
• Endocrine consequences in iron overloaded patients with Thalassaemia Major