TIF PATIENTS & HEALTHCARE PROFESSIONALS CAPACITY BUILDING WORKSHOP | 16-19 May 2024
The Thalassaemia International Federation is delighted to announce the organisation of the Capacity Building Workshop for Thalassaemia Patients & Healthcare Professionals in collaboration with Asociatia Persoanelor cu Talasemie Majora (APTM) & Rare Anaemias International Network (RAIN). The workshop will take place between 16 – 19 May 2024 in Bucharest, Romania.
Organized within the framework of TIF’s internationally acclaimed educational programme, the workshop offers a prime opportunity for both physicians and patients to engage in meaningful knowledge exchange concerning the newest scientific developments in the thalassaemia and haemoglobinopathies field. It also allows them to share common concerns and address challenges.
This event is a distinctive platform for dialogue about cutting-edge research and recent regulatory approvals of treatments aimed at managing and eradicating this condition. Moreover, the workshop will place a special emphasis on patient education and capacity enhancement, thereby fostering patient and caregiver empowerment—a critical element for ensuring their effective participation in decision-making entities and processes that lead to more constructive outcomes.
Please click here to register and view the preliminary programme:
Highlights
- The Fundamentals of Clinical Management for Thalassaemia & Haemoglobin Disorders
- Multidisciplinary Care of Haemoglobin Disorders
- Sharing Expertise through Case Presentations
- National Challenges in Addressing Haemoglobin Disorders
- New Era in the Care & Cure of Haemoglobin Disorders: Patient Testimonials
- Recently approved Innovative Therapies and Medicinal Products for Thalassaemia & Haemoglobin Disorders
- New Advances in the Pipeline for the Care & Cure of Haemoglobin Disorders
- Treatment Beyond the Haematologist & Paediatrician: Emerging Concerns
- Living with Thalassaemia & Haemoglobin Disorders: Opportunities, Challenges & Dilemmas
- Achieving Healthcare Reforms through Patient Advocacy
Objectives:
- Empower and build capacities for patients and their families through strengthening disease specific knowledge.
- Inform the medical and patient communities on the state-of-the-art clinical management of haemoglobin disorders, the latest scientific advancements in the field, and regulatory developments for new drugs and therapies.
- Extend the knowledge gained in experienced countries to other countries through sharing experiences and best practices.
- Develop the skills and capacities of patients for advocacy and productive participation in decision-making at the country and regional levels.
- Educate and create core groups of patients in each country to support and strengthen their role in monitoring their disease.
1st RAIN Summit for Patients with Rare Anaemias:
The Rare Anaemias International Network (RAIN), in partnership with the Thalassaemia International Federation (TIF) and the Asociatia Persoanelor cu Talasemie Majora (APTM) of Romania, is excited to announce the first RAIN Summit for Patients with Rare Anaemias. This inaugural conference is scheduled to take place on May 18-19, 2024, in Bucharest, Romania.
This summit offers a valuable platform for patients to engage in the exchange of knowledge regarding the latest scientific advancements in Rare Anaemias. Participants will have the opportunity to voice their concerns and discuss shared challenges.
The event promises a stimulating forum for discussing cutting-edge research, and recent approvals of new therapies, and will place a special emphasis on educating patients and building their capacity. Our goal is to empower patients and parents alike, fostering a well-informed community capable of strong advocacy. Their active participation is crucial at every level of decision-making, contributing to more effective and beneficial outcomes.
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THE CAPACITY BUILDING WORKSHOP IS MADE POSSIBLE BY THE FOLLOWING PARTNERS:
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.
