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4th INTERNATIONAL MEETING FOR PEOPLE WITH THALASSEMIA

May 11 | 2024
12PM – 4PM | New York

London – 5PM – 9PM
New York – 12PM – 4PM
Ottawa – 12PM – 4PM
Buenos Aires – 1PM – 5PM
India (standard time) – 9PM – 1AM
Pakistan – 9PM – 1AM

Bangladesh – 10PM – 2AM
Greece – 7PM – 11PM
Trindade e Tobago – 12PM – 4PM
Spain – 6PM -10PM
Malásia – 12AM – 4AM
México – 11AM – 3PM

London – 5PM – 9PM
New York – 12PM – 4PM
Ottawa – 12PM – 4PM
Buenos Aires – 1PM – 5PM
India (standard time) – 9PM – 1AM
Pakistan – 9PM – 1AM
Bangladesh – 10PM – 2AM
Greece – 7PM – 11PM
Trindade e Tobago – 12PM – 4PM
Spain – 6PM -10PM
Malásia – 12AM – 4AM
México – 11AM – 3PM

3 chat rooms

with discussion groups
divided by age groups

1 masterclass

on new treatments and
comprehensive care

+ than 20 countries

Participants from
previous editions

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ABOUT THE EVENT

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, in partnership with the Thalassaemia International Federation – TIF, will hold the 4th 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 11th and will run for 4 hours with simultaneous translation in English, Spanish and Portuguese. After the welcoming remarks, multidisciplinary experts will start a discussion about physical, mental, and emotional health, followed by discussion groups among participants. Everyone will be divided into three chat rooms, according to their age, with the following suggested themes:

Schedule

Chat Room 1 – Parents, family members and caregivers

Importance of 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

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

Comprehensive and transitional care: from pediatric to adult
Quality of life
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

Masterclass

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.

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