Our goals & activities

MPS Europe goals are to:

  • Provide expert representation of interests of persons affected with MPS and related diseases in front of decision and policy-makers
  • Promote public and professional awareness
  • Uphold human rights, eliminate discrimination and promote equality and social inclusion for all persons affected with MPS and related diseases
  • Promote the well-being of those affected by Mucopolysaccharide and related diseases through best practices of diagnosis, clinical management and treatment
  • Lobby for adoption and implementation of standards, principles and documents for MPS and related diseases in order to provide highest possible quality of life for persons affected
  • Act as an independent and supportive forum for European MPS Societies including emerging new MPS Societies
  • Identify research priorities and potential collaborations and where appropriate, work in partnership with the academic community and the pharmaceutical industry

MPS Europe performs the following activities to achieve the stated goals:

  • Advocates within European and International institutions for policies that address the needs of those affected by MPS and related diseases
  • Works collaboratively with European and International institutions in the interest of MPS and related diseases
  • Organises lectures, workshops, seminars and conferences
  •  Educates and empowers MPS and related diseases patients and patient representatives
  • Informs general and professional public about problems, rights and needs of persons affected with MPS and related diseases and increases the availability of latest knowledge and achievements in science and medicine about diagnostics, treatment, clinical studies and standards of care by improving information flow among national MPS societies
  • Supports access to treatment and care for all MPS and related diseases patients
  • Develops relationships and partnerships with International MPS Societies for the purpose of collaboration and joint learning
  • Strengthens collaboration among MPS societies who are shareholders of MPS Europe and supports and encourages the strengthening of their individual capacities
  • Supports establishing MPS Societies in countries where so far none exist;