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5th INTERNATIONAL MEETING FOR PEOPLE WITH THALASSEMIA

May 17 | 2025

NOON – 4PM | New York

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

Catherine Moura

CEO Abrasta

Eduardo Froes

President Abrasta

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.

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

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

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

Take the opportunity to have a coffee and check out the photo wall where you are an essential part of this story!

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

Inspiring words from thalassemia patients

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