What inspired you to work in the international association sector? Would you recommend this career to others? Why/ why not? 

For more than a decade, and since the 1980s, I have been involved in volunteer work for national patient associations. In 1993, I became heavily involved in the work of the Thalassaemia International Federation (TIF), which was truly inspiring. I recognized the tragic conditions and situations in most countries around the world where more than 80% of the thalassaemia population is born and lives. Hearing personal stories from patients, listening to treating physicians and scientists, and recognizing their great interest to help, I accepted the post of Executive Director of TIF with some reluctance. I left a permanent and well-paid job in the public sector, a decision that I have never regretted. Instead, TIF became a priority in my professional life and a second home.

I am inspired on a daily basis by the patients and their parents living in countries where the disease remains unaddressed and sub-optimally treated, and who struggle to obtain what their peers have in other countries. It is only through an international association with such a scope of work that I could have this opportunity.  

I consider the international association sector challenging and demanding, in terms of time, skills and knowledge. It is also fulfilling and rewarding to be able to put into practice all the knowledge and experience I gained through my different scientific and professional capacities. It is a privilege to support the vulnerable group of people with thalassaemia, translating the aspiring vision of providing patients globally with equal access to quality healthcare into real action. I would thus recommend a career in the international association sector for the endless opportunities, the potential to change lives for the better, and for your work to have a global impact. 

How do you/ your association #EmbraceEquity? Does giving a voice and a space to diverse groups make for better results? What are the challenges you encounter? Did you solve them? 

Equity is at the heart of TIF’s work, which is why we ensure equal participation and involvement of all relevant stakeholders globally, regardless of their region, background, education, and experience in all activities, whether educational, advocacy or otherwise. 

Thalassaemia affects hundreds of thousands of patients worldwide, of different races, cultures, religions, and levels of literacy, all of whom require the same basic medical and social care, including regular lifelong blood transfusions and chelation therapy. Our approach is truly holistic and embraces equity, as we raise the voices of patients from the grassroots and reach out to healthcare professionals and high-level policymakers to enable evidence-based policymaking and subsequently improve healthcare services for patients. This has resulted in patients living longer and better.

One of the major challenges we face is the lack of political will or financial resources to develop the infrastructure needed for service improvement, including disease-specific registries. Another major issue is the absence of patient associations in countries affected by the disease. These factors weaken the patients’ voice and hinder the work of TIF. To address this, we dedicate a significant amount of time and attention to capacity building for patient leaders in each country. We encourage the establishment of associations wherever patients live to strengthen their voice. We also focus on lifelong training for healthcare professionals, given the absence of a global body providing guidance to effectively manage the disease. 

Our global efforts have resulted in an increase in the number of patient associations from 6 in 1987 to 146 in 2023. Disease-specific treatment protocols based on TIF’s international guidelines for the management of transfusion-dependent thalassaemia have been implemented in over 40 countries. Additionally, the median age of people with thalassaemia has increased to 60 years of age when treated correctly. However, there is still much work to be done in developing countries where 80% of the global thalassaemia population lives. Sadly, in these countries, patients may only live up to their 20s. Therefore, we continue our efforts to save more lives globally.

How important are diversity, equity, and inclusion for the future success of associations? What initiatives, projects and ideas can you share that help other understand the real value of DEI? 

In a world marked by inequities at all levels, diversity, equity, and inclusion must be an integral part of each association working in the international sector. To identify solutions and successfully implement them in different settings, an in-depth understanding of all aspects of DEI is needed. 

For TIF, DEI represents the unmet needs of patients. As a result, we drafted the Global Thalassaemia Review (GTR), which lists and analyzes the world’s inequities in the field of thalassaemia, highlighting the need to address challenges in support of DEI. The GTR is a compass for all stakeholders globally, including patients, doctors, and policymakers. It is a reference advocacy tool developed under the auspices and with the support of the World Health Organization. By identifying and understanding gaps, each association can implement a targeted plan of action that yields concrete and positive results.

The need for safe and adequate blood, access to essential drugs, specialized care, and social protection remain the same for every patient, regardless of where they live. However, the tools, methods, and approaches must be tailored to each country’s needs, health priorities, and financial resources. There is no excuse for any country to leave any patient behind with a disease that can be prevented and effectively treated. 

TIF has promoted the development of guidelines for the management of thalassaemia, making it the first and only patient-driven organization to engage in such an activity. This was a unique opportunity for me to utilize my scientific background and passion to support others, and I believe that I have accomplished this mission with great success. I am privileged to have the undivided support of the global patient and healthcare professionals’ communities and am lucky to be surrounded by a talented and highly skilled team.