Board Members
Mary Pavlou
My name is Mary Pavlou and I live in Athens Greece. My primary studies were in Nursing and I obtained a Master’s Degree in Health Care Services Management. I’m head of the Pathological department in a public hospital were I have worked for almost 20 years now.
I was diagnosed with Fabry disease in 2001 along with my mother and brothers. I’m receiving ERT since 2006 due to kidney problems caused by Fabry. I am the secretary of the Greek Lysosomal Association “Solidarity” since 2002 and an active member of the Greek Union of Rare Diseases. I feel lucky that there is a drug for my condition unlike some other chronic diseases even though there are still many problems.
I feel extremely honored to be a member of the FIN board and I will work hard to obtain the goals and objectives of FIN. I strongly believe that a global network between national patients associations, pharmaceutical companies and other stakeholders can work wonders both in informing the public, creating awareness to the public authorities and provide support for the entire rare disease community.
Jack Johnson
I was born in 1963 in Missouri, a state in the middle of the U.S. I grew up on cattle ranches, a dairy and farms across the Midwest and western U.S. I have Fabry disease along with many family members. We have traced Fabry back to my grandfather’s grandmother. I am thankful for my supportive wife Debra and our two big boys. I am a founding member of FIN and am honoured to be a board member. I look forward to working with the wonderful FIN board to provide help to the Fabry community on a global level. I am also one of the founders and executive director of the Fabry Support & Information Group (FSIG) in the U.S. I believe my years of experience with FSIG will help in FIN’s objectives and I hope to gain beneficial knowledge from greater involvement in the international Fabry community.
Coming from a family with a long history of Fabry disease involvement, providing support and advocacy for others in the Fabry community has always been a matter of great personal importance.
Anna Meriluoto
Anna Meriluoto – Vice President Europe & Russia
I was diagnosed with Fabry disease in 1996 at the age of 28 along with my mother and older brother. I live in the Helsinki area in Finland and work as a college lecturer. I consider myself to be the lucky one in the family since my Fabry symptoms have been milder and I have been able to lead a relatively normal life as a Fabry affected person: study, work and do sports. Getting older, however, means learning to take things easier and not being so hard on myself. I also feel extremely lucky because my lovely daughter has not inherited this disease from me.
I have been actively involved in patient advocacy for almost 20 years, since the establishment of the Finnish Fabry Association in 2003. Coming from a small country I feel that international relations and teamwork are of utmost importance. I first joined FIN as the Finnish representative in Amsterdam in 2008. I see the role of FIN as a vital network between national patient organisations, physicians, pharmaceutical companies and other stakeholders. I feel honored to be a member of the FIN board along with my extremely competent colleagues from around the world. FIN has achieved great things already but there still remains a lot of work to be done.
Everyday life with a life-threatening chronic disease is not easy. In addition to the physical symptoms the disease can be mentally very challenging in many ways, both to the Fabry affected as well as their family members. Because of this the existence of support groups on both national and international level is essential.
I’m keen to talk about the holistic approach to treating patients, not forgetting the mental issues. I´m also the proud co-mentor of the wonderful FIN Young Adults Community. We are in the midst of forming the future network of patient advocates.
Yifan Xu
My name is Yifan Xu, born in 1982 and diagnosed as a classical Fabry disease patient in 2007 in China. I am honoured to be one of the FIN board member and have the opportunity to contribute to the global Fabry community. I am also the vice president of China Fabry Community since 2017.
After being diagnosed and figuring out what Fabry disease was, I was really frustrated for years. Thanks to my wife and her persistent efforts, my attitude towards the disease gradually changed and so did my life, from denial to acceptance, from self-isolation to open minded and from negative to positive. Right now I am trying my best to be myself, I want “me” to define my life, not my disease. Scuba diving, skiing, driving and travelling around the world are my favorite hobbies.
I do think I am a lucky guy. Although the disease is unfortunate, I do believe it also brings me something good. All my life, I received so many support and encouragement from my family, my friends, physicians and the people around me. I got so much from them, and would like to pass on the love and support to others and Fabry patients. I am so excited to join this perfect team, and looking forward to contribute my experience and knowledge to this platform, and try my best for FD patients so they can have the best quality of life possible.
Tatevik Yezekyan
Everything depends on perspective, and FIN changed my perspective on rare diseases.
Hi, I am Tatevik. I’m an engineer based in Italy, and passionate about traveling and photography. At the age of 27, my studies and research brought me to Italy, where my Fabry journey started. Suddenly, in a single day, I found many questions answered, but at the same time, millions more raised. I have gone through the tough reality of rejection and acceptance of the condition. My story drastically changed when I joined the Fabry Young Adults community in 2020. In hard situations, we seek belonging, understanding, empathy, and peer support. Three years after my diagnosis, I found my support groups full of empathy and understanding in the form of the Italian Fabry association (AIAF) and the FIN Young Adults community.
We are afraid of things we don’t know; education and awareness strengthen us by creating a solid base for understanding ourselves and navigating our needs. Fabry is our lifelong learning project, and patient organizations help us stay on course and keep up the momentum. This journey has helped me understand the value of support communities and patient organizations, and how learning and sharing can make a difference. Then, it stops scaring you and starts motivating you. Your perspective changes.
I am honored to be board member of FIN and will contribute my best to the Fabry community, supporting patients and organizations in our mission to improve our lives. We learn together, get better together.
Bob Stevens
At first becoming a Trustee, then progressed to Managing Director and Group CEO of various patient organisations, supporting those living with rare diseases and complex needs. Bob wanted to bring together his family experiences of a “Rare life lived” and commercial attributes in order to improve the lives of those most marginalised in society whilst, at the same time, helping to create a more sustainable financial future for patient organisations both in the UK and globally. As well as being Group CEO of the MPS Society/Rare Disease Research Partners he is proud to serve as Vice Chair of the LSD Collaborative, Board Member of the worldwide International MPS Network, Acting Chair of the New Born Screening Collaborative and work as a patient representative for MPS in various global charitable access programs that provide a possible lifeline to treatments in selected areas of the world.
These are not job roles, but a way of life!
Charlotte Wauters
My name is Charlotte Wauters and I am the coordinator for FIN.
Based in Belgium, I support the FIN Board in the day-to-day management of all FIN projects and activities. Having a background in marketing in the pharmaceutical field and lots of experience in project management, I hope to contribute to FIN’s mission and vision.
Fabry International Network
As Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry affected people, we need them to join forces and speak out.
That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 61 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure.
Our mission is to empower Fabry affected people all over the world.
FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
Industry Partners
We are a proud member of
RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases.
RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.
They are:
- Patient driven
- Internationally focused
- Inclusive
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 944 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
The mission of the European Medicines Agency (EMA) is to foster scientific excellence in the evaluation and supervision of medicines, for the benefit of public and animal health in the European Union (EU).
The World Patients Alliance (WPA) is nonprofit umbrella organization of patients and patients’ organizations around the globe. The WPA provides the platform to empower and raise the patients’ voice for the provision and access to safe, quality and affordable healthcare.