Welcome to the International MPS and Related Diseases Network

Blog

About the MPS Society

Created in April 1992 by Christine Lavery, president of the MPS Society of the United Kingdom then, with the support and engagement of other MPS organizations around the world, as the MPS Society of Australia, Austria, Germany, Italy, Norway, Poland, Russia , and other organizations that have decided to unite to learn and share their experiences in each country and work to promote better care for families and people with MPS and other related illnesses. As well as working with the medical community to develop treatments so that people affected by MPS and related disorders could have a better quality of life.

Always thinking about well being

Always promoting better service to families and people with MPS and Related Diseases

Terri Kein
Co-Chair

President/CEO, National MPS Society, USA

Eda Selebatso

Director

Founder of the Botswana Organization for Rare Diseases (BORDIS)

Kim Angel
Treasurer

Canadian MPS Society and Treasurer

Bob Stevens
Co-Chair

CEO, MPS Society & MPS Commercial, UK

Regina Prospero, Communications Director

Vice President Vidas Raras Instítute

Vanessa Ede-Scott
Director

Operations Manager, MPS and Related Diseases Australia

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The IMPSN mission is to be the primary platform for the MPS and Related Diseases. IMPSN is a global community of informed and empowered organizations, who promote access to medicines, new research, and programs that lead to better quality of lives for patients and those affected by these diseases.

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To facilitate the continual development of informed MPS and Related Diseases Communities. To serve as a resource for stakeholders around issues and challenges from a Political, Social, and Health standpoint. To influence policy, take action, and advocate on a global level t help deliver fair and equitable access to treatments and care for those affected by MPS and Related Diseases.

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  • To act as an independent forum for MPS Societies and relevant patient associations at a Global level ;
  • To promote the wellbeing of those affected by Mucopolysaccharide and related lysosomal diseases through the best practices of clinical management and treatment;
  • To promote public and professional awareness of Mucopolysaccharide and related diseases;
  • To oversee the nominations for MPS Society or relevant patient association;
  • To host the International Symposium for Mucopolysaccharide Diseases and preside over the decision making;
  • Identify research priorities and potential collaborations where appropriate working in partnership with the academic community and the pharmaceutical industry;
  • Develop relationships and partnerships with other lysosomal disease groups, for the purpose of collaboration and joint learning
  • get started today