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Unwavering commitment to connecting and empowering the Global MPS community.

Our Founder, Christine Lavery

Christine Lavery's journey as a dedicated advocate for the MPS community began in 1977 when her daughter was diagnosed with MPS I. This personal experience ignited her lifelong mission to raise awareness and assist families navigating similar challenges. In 1996, Christine co-founded the International MPS Network (IMPSN), creating a global alliance to unite MPS patient organizations worldwide, foster collaboration, and exchange valuable resources and best practices.

A lasting legacy

Building on Christine Lavery's foundational work, the International MPS Network continued to evolve and grow. In 2018, the first Board of Directors for the IMPSN was established, marking a significant step in the organization's governance and strategic direction. This new leadership structure enabled the network to better coordinate initiatives and engage with the global MPS community. By 2020, the IMPSN was formally recognized as a not-for-profit organization in Canada. The organization further advanced its mission in 2024 with the hiring of its first Executive Director, a pivotal move aimed at expanding outreach, enhancing advocacy efforts, and ensuring that the vision of hope and support for MPS families continues to thrive.

Kim Angel

Executive Director of the IMPSN

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Terri Klein

Co-Chair of the IMPSN and President and CEO of the National MPS Society

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Eda Selebatso

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

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Regina Próspero

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

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Zoltán Ujfalusi

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

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Ulf Blomqvist

Director of the IMPSN and Chairman of the Board of the Swedish 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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Terri Klein

Director 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.

Eda Selebatso

Director 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.

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.

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.

Ulf Blomqvist

Director 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.