TIF INTERNATIONAL CONFERENCE | 3-5 November 2023

Inside the Conference

The 16th International Conference on Thalassaemia and Other Haemoglobinopathies, jointly organised with the 18th TIF Conference for Patients and Parents, was held from 3 to 5 November 2023, at the Grant Hyatt Hotel in Kuala Lumpur, Malaysia. This monumental event was put together by TIF in collaboration with the Ministry of Health of Malaysia, the Federation of Malaysian Thalassaemia Societies, the Malaysian Society of Haematology, and the Malaysian Society of Paediatric Haematology & Oncology.

The Conference marked the first in-person TIF international event in six years and brought together more than 1,500 attendees, including patients and healthcare professionals from 62 countries. With a faculty of 59 speakers, chairpersons, and moderators from 24 countries, the conference featured 17 sessions covering various topics related to thalassaemia, sickle cell disease, and other rare anaemias.

The faculty comprised of treating physicians, scientists, members of TIF’s advisory board, representatives from official health bodies like the World Health Organization and the European Commission, as well as numerous patients and patient advocates. Over the course of two days, the programme offered valuable insights, best practices, and recommendations for collaboration across countries worldwide.

Programme Highlights

• Optimal Clinical Management
• Policies to address Health Inequalities and Unmet Patient Needs
• Timely and Appropriate Multidisciplinary Care
• Scientific Advances: Care and Cure
• Best Practice Exchange: TIF’s Regional Networks
• Patient Empowerment and Advocacy
• Capacity Building of Patient Associations
• α-thalassaemia: Diagnosis and Treatment
• Prevention Strategies
• Sickle Cell Disease

Key Attending Officials

• Dr. Tedros Adhanom Ghebreyesus, WHO Director-General (via virtual participation)
• Dr. Stella Kyriakides, EU Commissioner for Health (via virtual participation)
• Dr. Rabindra Abeyasinghe, representing the WHO West Pacific Regional Office as WHO Representative to Malaysia, Brunei Darussalam, and Singapore
• Her Excellency Dr. Zaliha binti Mustafa, Minister of Health of Malaysia
• Prof. Vichai Tienthaworn, President of the Praboromarajchanok Institute under the Ministry of Public Health and 2023 recipient of the WHO Sasakawa Health Prize for Thailand
• Prof. Zilfalil bin Alwi, UNESCO Chair in Human Genetics on Thalassaemia at the Universiti Sains Malaysia
• Prof. Carmencita Padilla, Chancellor of the University of the Philippines, Founding Director of the Institute of Human Genetics, and Newborn Screening Reference Center in the Philippines

Novel Insights

During the Conference, three novel TIF publications were introduced, each accompanied by detailed presentations within the Scientific Programme. These publications marked new advancements in the understanding, treatment, and overall care of thalassaemia, covering three novel aspects of this condition.

For the first time, TIF’s expert medical collaborators—principal authors of two landmark books on α-thalassemia and β-thalassaemia—have separately but thoroughly addressed, with solid scientific support, the non-transfusion dependent forms: Non-Transfusion Dependent α-thalassaemia and Non-Transfusion Dependent β-thalassaemia.

These crucial resources will be regularly updated with the latest documents and evidence-based information as it becomes available. Moreover, an updated version of the TDT Guidelines is anticipated to be completed by the end of 2024.

TIF’s official announcement of Regional Networks highlighted a commitment to bolstering multi-stakeholder partnerships. This initiative aims to facilitate the exchange of best practices among healthcare professionals and Reference Centres while promoting patient education and empowerment. The objective is to enhance advocacy efforts and policy development to significantly improve patient outcomes.

In a pivotal Policy Session, decision-makers joined patients and healthcare professionals to deliberate on future strategies for all stakeholders to take a more active role in shaping disease-specific policies. This collaborative approach is aimed at enhancing the care and quality of life for patients, thereby reducing health disparities and addressing unmet needs.

Official Report & Abstract Book

Explore the Official Report of the TIF2023 Conference
for an in-depth summary of high-level attendees, key highlights,
and comprehensive session breakdowns from both
the Scientific and Patient Programmes for every day of the event.

Find a curated collection of the innovative research papers presented
at the TIF2023 Conference, offering insights into ground-breaking
advancements and explorative studies across various fields
in the Abstract Book.