

Brasil 1pm – 5pm
London 5pm – 9pm
Ottawa 12pm – 4PM
Buenos Aires 1pm – 5pm
India (standard time) 9pm – 1am
Pakistan 9pm – 1am
Bangaladesh 10pm – 2am
Greece – 7pm – 11pm
Trindade e Tobago 12pm – 4pm
Spain 6pm – 10pm
Malásia 12am – 4am
México 11am – 3pm
Thalassemia is a rare condition, and for that reason, there are very few opportunities for communication and interaction among patients, which intensifies doubts, fears, isolation and prejudice.
Thinking about the positive impact of the previous editions, in the context of socialization and mainly, the value of exchanging experiences and ideas, Abrasta will hold the 5th Meeting with participants from different countries in an online format.
The participants will have an opportunity to meet other people with the same condition and share their individual experiences living with thalassemia. They will also be invited to speak about relationships, work, challenges and achievements. This virtual meeting will foster a sense of belonging, support and inspiration.
The event will be on Saturday, May 17th and will run for 4 hours with simultaneous translation in English, Spanish and Portuguese. After the welcoming remarks, multidisciplinary experts will start a conversation about holistic well-being, followed by discussion groups among participants.
To enrich and enhance the program, we will proceed with a special session focused on promoting knowledge and open dialogue in the physician-patient relationship. We will feature a masterclass on new technologies in medicine and comprehensive care with experts, taking a multidisciplinary approach to ensure the best outcomes and quality of life for people with thalassemia.
SCHEDULE
Opening and Welcome | 12:00 PM

Catherine Moura
CEO Abrasta

Eduardo Froes
President Abrasta
Holistic Well-being | 12:15 PM
Chat about strategies for a healthy life

Dr. henrique Rego
Geriatric physician from the Hospital das Clínicas, Faculty of Medicine at USP; professor and coordinator of the postgraduate program in Advanced Studies in Integrative Health at the Albert Einstein Teaching Institute.
Discussion Circles | 12:45 PM
Chat Room 1 – Parents, family members and caregivers

Maria Hadjidemetriou
Moderator
- Importance of a support network and family members
- Challenges imposed by the care routine
- Challenges related to blood transfusion
- Treatment adherence
- Therapeutic advances and innovations based on where the person lives
- Children’s independence
- Lack of knowledge about the pathology on the part of parents, health professionals and multidisciplinary specialists
- Fear of loss: how to cope with the fear of losing a child
Chat Room 2 – 14 to 26 years old

Elisangela Pauli
Moderator
- Transition to adulthood:
- insertion and permanence in the labor market
- starting college
- moving to another city
- travel and exchange programs
- Displacements for treatment
- Insecurities, stigmas and prejudices
- Mental health, well-being and self-esteem
- Relationships, sexuality and fertility
- Self-care routine: Physical exercise, healthy eating
- Adherence to treatment and the importance of iron chelation
- Difficulty accessing treatment
Chat Room 3 – 27+ years old

Janaína Rosenburg
Moderator

Afshan Shirkavand
Moderator
- Comprehensive and transitional care: from pediatric to adult
- Quality of life
- Social vulnerability
- Insertion and permanence in the labor market
- Development of secondary diseases
- Lack of information about the disease and patient rights
- Access to treatment and disease monitoring tests
- Lack of blood for transfusions
- Access to socioeconomic benefits
Break | 1:45 PM
Take the opportunity to have a coffee and check out the photo wall where you are an essential part of this story!
Masterclass | 2:00 PM
A chat with medical specialists about new technologies, including integrative medicine as a complementary approach to a life of well-being and balance.

Dr. Kevin Kuo
Hematologist and clinician-investigator specializing in non-malignant hematological disorders at the University of Toronto

Tatiane Mota
Moderator

Eduardo Froes
President Abrasta
Closing | 3:40 PM
Inspiring words from thalassemia patients
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