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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.

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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.

Kim Angel

Executive Director of the IMPSN

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Ulf Blomqvist

Chair of the IMPSN and Chairman of the Board of the Swedish MPS Society

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Eda Selebatso

Vice Chair of the IMPSN and Co-founder and Chairperson of the Botswana Organization for Rare Diseases

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Marilyn Marchment

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

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Regina Próspero

Director of the IMPSN and Co-founder and CEO of the Instituto Vidas Raras

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Terri Klein

Secretary of the IMPSN and President and CEO of the National 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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Zoltán Ujfalusi

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

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Mohamed Osman

Director of the IMPSN and President of Egyptian MPS Society

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Our Staff and Board of Directors

Hernan Amartino

Austral University Hospital (Argentina)

Brian Bigger

University of Edinburgh (Scotland)

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 (India)

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)

Maurizio Scarpa

Center for Rare Diseases Udine University Hospital (Italy)

Meow-Keong Thong

University Tunku Abdul Rahman (Malaysia)

Scientific Advisory Board

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Ulf Blomqvist

Chair of the IMPSN and Chairman of the Board of the Swedish MPS Society

Ulf Blomqvist is the Chairman of the Board of the Swedish MPS Society and a dedicated advocate for families affected by MPS. Inspired by the memory of his late son, who had MPS IIIA, Ulf is passionate about improving healthcare systems, advancing newborn screening, and expanding access to treatments globally. With a background in innovation management and a Licentiate degree in Media Technology, Ulf brings strategic and visionary leadership to the IMPSN Board, where he aims to contribute to meaningful change and drive forward the mission of supporting the global MPS community.

Eda Selebatso

Vice Chair of the IMPSN and Co-founder and Chairperson of the Botswana Organization for Rare Diseases

Eda Selebatso is the co-founder and current Chairperson of the Botswana Organization for Rare Diseases (BORDIS), Eda has been a trailblazer in bringing attention to the challenges faced by families affected by rare diseases in Botswana and beyond. With a PgD in Project Management and a BSc in Biology and Chemistry, Eda has a diverse career spanning health, conservation, education, and mining sectors, where she has successfully led numerous strategic initiatives and innovations.

Her career took a pivotal turn in 2014 when she stepped away from formal employment to care for her children, two of whom have rare conditions. Since then, Eda has been a pioneering voice for the rare disease community, contributing her expertise to various global organizations, including the UN NGO Committee for Rare Diseases, Rare Diseases International, the International Gaucher Alliance, and the International Rare Diseases Research Consortium. Eda is deeply committed to addressing health inequities and advocating for social justice, ensuring that individuals with rare conditions have equal opportunities to lead fulfilling lives and contribute meaningfully to society.

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.

Regina Próspero

Director of the IMPSN and Co-founder and CEO of the Instituto Vidas Raras

Regina Próspero is a highly accomplished healthcare leader with extensive experience in the rare disease community. She holds a degree in Surgical Instrumentation and a Bachelor of Laws, alongside a postgraduate degree in Healthcare Compliance. As Co-founder and CEO of the Instituto Vidas Raras, Regina has been a driving force in advocating for patients with rare diseases in Brazil. She is also a founding partner and Vice-President of ALIBER (Ibero-American Alliance of Rare Diseases).

Regina has been actively involved in shaping public policies for rare diseases through her role as a member of the Working Group of the Ministry of Health for Rare Diseases since 2001. She played a pivotal role in organizing the 13th International Symposium on MPS and Related Diseases (MPS2014 Brazil) and serves as an effective member of the Ethics Committee in Clinical Research at Sabará Children’s Hospital.

In addition to her advocacy work, Regina is the Director of Compliance at Casa de Saúde Nossa Senhora dos Raros in Taubaté, São Paulo, contributing to the advancement of ethical and regulatory standards in the healthcare sector.

Terri Klein

Secretary of the IMPSN and President and CEO of the National MPS Society

Terri Klein is a highly respected leader in the rare disease community, serving as a Director of the International MPS Network (IMPSN) and President and CEO of the National MPS Society. With over 20 years of experience in rare disease advocacy, Terri has been instrumental in advancing patient support, organizational development, and multi-tier fund development. She has also held key roles as the first Executive Director of ISMRD and is a founding member of the Mucolipidosis Research Collaborative Network.

Terri holds graduate degrees in Public Administration and Nonprofit Management, and her advocacy work has been published extensively. She is a passionate advocate for health equity, drug development, and rare disease policy, and has been a dedicated member of the Society since 2001, inspired by her daughter Jennifer, who is affected by Mucolipidosis III.

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.

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.

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.