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abril 2, 2021 Nenhum comentário

Dear IMPSN Members: For many years, this time of the year meant that we were about to meet in person

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

Bob Stevens
Director

CEO, MPS Society & MPS Commercial, UK

Terri Kein
Director

President/CEO, National MPS Society, USA

Eda Selebatso

Secretariat

Founder of the Botswana Organization for Rare Diseases (BORDIS)

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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

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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

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