Opening and Welcome | 13:00 - Brasília | 12:00 PM - Nova York
Catherine Moura
CEO Abrasta
Eduardo Froes
President Abrasta
Holistic Well-being | 13:15 - Brasília | 12:15 PM - Nova York
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 | 13:45 - Brasília | 12:45 PM - Nova York
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 | 14:45 - Brasília | 1:45 PM - Nova York
Take the opportunity to have a coffee and check out the photo wall where you are an essential part of this story!
Masterclass | 15:00 - Brasília | 2:00 PM - Nova York
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
Closing | 16:40 - Brasília | 3:40 PM - Nova York
Inspiring words from thalassemia patients.