Unwavering commitment to connecting and empowering the Global MPS community.

Our Founder, Christine Lavery

Christine Lavery’s remarkable journey began after the loss of her son to MPS II (Hunter syndrome). In May 1982, she founded the MPS Society to ensure that no other family facing a rare disease would have to navigate it alone. Motivated by the isolation her family experienced, Christine set out to build a supportive network for others affected by MPS and related conditions. Her compassion, determination, and vision laid the foundation for what would become a trusted source of hope and advocacy for families across the UK and beyond.

A smiling older woman with short, light gray hair and glasses, wearing a dark jacket with a white collar, stands in front of a textured, blue-and-brown background.

A Lasting Legacy

Over nearly four decades, Christine led the MPS Society with unwavering commitment, expanding its reach and impact. Under her leadership, the Society grew into a vibrant community offering family support, driving research, and strengthening international collaboration.

Christine’s vision extended far beyond the UK. She helped bring together patient organisations from around the world to share knowledge and advocate as one global voice, playing a leading role in the creation of both the International MPS Network (IMPSN) and MPS Europe. Through her leadership and tireless collaboration, she laid the groundwork for a unified international movement that continues to connect, empower, and inspire the global MPS community today.

Christine’s enduring legacy lives on through the lives she touched and the worldwide network she helped to build — one grounded in care, connection, and courage.

Dragana Miletic Lajko

Network & Operations Coordinator

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Kim Angel

Executive Director of the IMPSN

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Neesha Khanderia

Volunteer Partnerships & Development Consultant

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Operating Team

Executive Committee

Zoltán Ujfalusi

Interim Chair of the IMPSN and Vice President of the Hungarian MPS Society

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Marilyn Marchment

Vice Chair of the IMPSN and Vice-Chair of the Canadian MPS Society

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Mohamed Osman

Secretary of the IMPSN and President of Egyptian MPS Society

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Rémi Villalongue

Treasurer of the IMPSN

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Mohamed Osman

Secretary of the IMPSN and President of Egyptian MPS Society

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Julie Chou

Director of the IMPSN and Head of Communications at the Taiwan MPS Society

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Tetiana Kulesha

Director of the IMPSN

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Rosely Maria Fanti Garcia Cizotti

Director of the IMPSN

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Samat Ramazanov

Director of the IMPSN

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Adrian Toggenburger

Director of the IMPSN

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Board of Directors

Hernan Amartino

Austral University Hospital (Argentina)

Maurizio Scarpa

Scientific Advisory Board Chair

Center for Rare Diseases Udine University Hospital (Italy)

Hernan Amartino

Austral University Hospital (Argentina)

Brian Bigger

University of Edinburgh (Scotland)

Barbara Burton

Northwestern University, Feinberg School of Medicine (USA)

Dung Chi VU

Vietnam National Children’s Hospital (Vietnam)

Yin-Hsiu (Nancy) Chien

National Taiwan University Hospital (Taiwan)

Mireia del Toro

Hospital Universitari Vall d´Hebron Campus (Spain)

Matthew Ellinwood

National MPS Society (USA)

Yoshikatsu Eto

Southern Tohoku Institute for Neuroscience/Tokyo Jikei University (Japan)

Fatih Ezgu

Gazi University, Ankara (Turkey)

Michal Inbar Feigenberg

The Hospital For Sick Children (Canada)

Maria Fuller

Adelaide University (Australia)

Roberto Giugliani

Casa Dos Raros & UFRGS, Porto Alegre (Brazil)

Paul Harmatz

University of California San Francisco (USA)

Christian Hendriksz

A Rare Cause/Northwest University South Africa (UK/South Africa)

Salman Kirmani

Aga KhanUniversity, Karachi (Pakistan)

Christina Lampe

University of Giessen (Germany)

Scott Loiler

National MPS Society (USA)

Nicole Muschol

University Medical Centre Hamburg-Eppendorf (Germany)

Torayuki Okuyama

Saitama Medical University (Japan)

Meow-Keong Thong

University Tunku Abdul Rahman (Malaysia)

Scientific Advisory Board

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Dragana Miletic Lajko

Network & Operations Coordinator

Dragana joins IMPSN with more than 15 years of international experience in patient advocacy, stakeholder engagement, operations, and strategic development. She is a passionate rare disease advocate and the founder of MPS Serbia, where she has led efforts to build a strong national platform for rare disease awareness, patient support, and access to treatment.

She has also made significant contributions at the European level through her work with MPS Europe, supporting strategic development, patient empowerment initiatives, and cross-border collaboration.

As an active member of the IMPSN network, Dragana brings a unique combination of lived experience, leadership, and operational excellence. In her new role, she will help strengthen our global network, enhance coordination across programs and projects, and support the continued growth of our international community.

In Dragana’s own words: “Joining the IMPS Network feels both meaningful and deeply personal to me. My work in rare disease advocacy has always been driven by the belief that every patient deserves access to care, support, and a real chance at a better life. I’m excited to contribute my experience and energy to a community that is pushing those boundaries forward every day.”

Neesha Khanderia

Volunteer Partnerships & Development Consultant

Neesha Khanderia is a global patient advocacy and strategic partnerships leader with over 15 years of experience across rare diseases, public affairs, stakeholder engagement, and industry collaboration. She is passionate about building meaningful partnerships that advance patient-centered care, improve access, and strengthen global advocacy efforts within the rare disease community.

At IMPSN, Neesha supports strategic partnerships, funding development, and global collaboration initiatives focused on advancing advocacy, access, and long-term network sustainability. She is deeply committed to amplifying patient and caregiver voices while fostering innovative partnerships that improve outcomes for individuals and families affected by MPS and related diseases worldwide.

Zoltán Ujfalusi

Director of the IMPSN and Vice President of the Hungarian MPS Society

Zoltán Ujfalusi is the Vice President of the Hungarian MPS Society and a dedicated advocate for families impacted by rare diseases. As a father of two boys with MPS-II, he brings personal insight and passion to his work in the rare disease community. Professionally, Zoltán is an Associate Professor at the Department of Biophysics at a medical university, where he conducts research and lectures on topics at the intersection of science and medicine. Outside of his professional and advocacy work, Zoltán enjoys reading, running, motorcycling, and traveling. His diverse interests and commitment to improving the lives of those affected by MPS make him a valuable leader in the rare disease community.

Marilyn Marchment

Treasurer of the IMPSN and Vice-Chair of the Canadian MPS Society

Marilyn holds a Bachelor of Arts in English and Sociology, with a post graduate certificate in public relations. She currently sits on the Board for Douglas College and is the Vice-Chair of the Canadian MPS Society for Mucopolysaccharide & Related Diseases. Previous board work includes the Kettle Society (2016–2022) and International Association for Public Participation. She has more than 25 years of strategic communications, strategic planning, community engagement and social marketing experience in public and private sectors. As Principal of big think communications inc., Marilyn and her team partner with clients to generate sustainable decisions and actions, to plan and build for the future, to resolve complex issues and foster well-being and positive change. big think is a long-term strategic partner to leadership teams—trusted to think bigger, move smarter and shape outcomes. Marilyn leads engagements that clarify vision, set bold goals, align people and strategy and build the momentum needed to deliver results. From navigating high-stakes challenges to designing integrated communications and community strategies, her work turns complex realities into achievable action.

Mohamed Osman

Director of the IMPSN and President of Egyptian MPS Society

Mohamed Osman is a distinguished patient advocate and leader with over two decades of professional experience, currently serving as President of MPS Egypt and Regional Patient Advocate for the Middle East and North Africa (MENA) Region within the MPS and related LSDs diseases Division of the MENA-MGA (MENA Medical Genetics Association).

Driven by personal commitment and professional expertise, Mohamed has led numerous awareness campaigns, regional workshops, and strategic engagements to improve diagnosis, treatment access, and patient support for rare disease communities. His efforts have significantly enhanced regional collaboration between patient associations, healthcare professionals, and policymakers.

In addition to his advocacy leadership, Mohamed has over 20 years of procurement and sourcing experience across oil & gas, construction, and public health. He currently serves as Strategic Sourcing & Local Content Consultant and holds advanced credentials from CIPS (UK) and different universities around the globe, with a strong track record in cost savings, local supplier development, and supply chain optimization.

Rémi Villalongue

Director of the IMPSN

Environmental project manager. Volunteer since 2013 and head of the families committee of the French association "Vaincre les Maladies Lysosomales (VML)". Father of Luc, MPS1.

Julie Chou

Director of the IMPSN and Head of Communications at the Taiwan MPS Society

Julie Chou serves on the Board of the International MPS Network as a second-generation advocate and current Head of Communications for the Taiwan MPS Society. Her involvement in rare disease began in childhood, volunteering alongside her parents who founded the Society in memory of her elder brother, who had MPS II severe. Over the years, she led communication efforts to raise awareness and strengthen community support for MPS in Taiwan.

With a background in marketing and an MBA from the University of Oxford focused on social enterprise, Julie brings a fresh perspective to the IMPSN Board. She is especially committed to supporting the long-term sustainability of family-founded organizations by exploring pathways for generational leadership transition—whether through empowering siblings like herself or integrating professional management to carry forward the mission with continuity and care.

Rosely Maria Fanti Garcia Cizotti

Director of the IMPSN

I am the aunt of two young men with MPS Type 6; one passed away at age six, and the other is alive today after participating in a clinical trial for his medication in Brazil. I have spent 25 years working at the Vidas Raras Institute, where I serve as one of the organizers of the MPS 2024 Symposium and have created and developed the MPS Day campaigns since the very first one.

Samat Ramazanov

Director of the IMPSN

Samat Ramazanov has dedicated more than 17 years to volunteer and charitable work supporting people living with rare diseases. Since 2018, he has led the Zhana Ömir Public Foundation for Patients with Mucopolysaccharidosis and Rare Diseases in Kazakhstan, promoting patients’ rights and improving access to diagnosis, treatment, education, and support services. Under his leadership, the foundation has developed national and international partnerships with government institutions, healthcare professionals, patient organizations, and global experts.

For nearly ten years, Samat has also served as a hospital clown in pediatric oncology and rare disease wards, providing emotional support to children and their families during long-term treatment. A graduate in Film Directing from Turan University, he produces social awareness videos and documentaries highlighting the challenges faced by people with rare diseases. He has represented Kazakhstan at international conferences and forums in Germany, Poland, Azerbaijan, Italy and the United States, fostering global collaboration to improve the lives of patients with rare diseases.

Adrian Toggenburger

Director of the IMPSN

Adrian Toggenburger is a Board Member of the International MPS Network (IMPSN) and President of the MPS Society Switzerland. Living with MPS II, he combines personal experience with many years of patient advocacy and leadership. He is the founder of Toggenburger Service GmbH, where he supports healthcare organizations, research institutions, and industry partners in meaningful Patient and Public Involvement (PPI). Through his international work, he is committed to strengthening collaboration between MPS organizations, promoting knowledge sharing, and ensuring that the patient voice is included in research and healthcare decision-making. He also co-led the development of the international Transition to Adulthood Toolkit, a global resource created by adults living with MPS to support others during their transition into adult life. His goal is to improve the lives of people living with rare diseases worldwide.