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5th INTERNATIONAL MEETING FOR PEOPLE WITH THALASSEMIA

During the 5th International Meeting for People with Thalassemia, we brought together more than 200 participants from 27 countries, who were able to share stories, aspirations, and knowledge.

Dr. Henrique Rego, from Brazil, shared strategies for a healthy life, highlighting the connection between health and happiness, the importance of self-awareness for a good quality of life, and the fundamental pillars of health: physical, emotional, intellectual, relational, and spiritual.

Drs. Kevin Kuo, from Canada, and Thomas Coates, from the United States, provided valuable insights on new therapies, such as the study of Mitapivat in adults, and updates from the 2024 Annual Meeting of the American Society of Hematology (ASH). They also addressed integrative care topics, such as iron overload in the blood.

On behalf of the Brazilian Thalassemia Association (Abrasta), we thank the Thalassemia International Federation (TIF) for supporting the promotion of the event; our sponsor Chiesi; and also our supporter Agios, for believing in and investing in this cause.

For us, it is extremely rewarding to provide moments like this, bringing together people from different parts of the world for a common good: health.

You can always count on us!

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

Dr. Thomas Coates

Hematologist and expert in sickle cell disease and thalassemia. Head of Hematology at the Cancer and Blood Disease Institute at Children’s Hospital Los Angeles and Professor of Pediatrics and Pathology at the University of Southern California Keck School of Medicine.

Tatiane Mota

Moderator

Eduardo Froes

President Abrasta

Inspiring words from thalassemia patients

Organization

Sponsor

Support

Institutional Support