Network Aims

Memorandum of Understanding

GOVERNANCE

The International MPS Network is the official body of the patient associations representing MPS and MPS Societies at a European and global level.

At a meeting of the relevant patient associations and MPS Societies on 25th June 2008 at the International Symposium of Mucopolysaccharide Diseases in Vancouver this Memorandum of Understanding was approved as the Governance document for the International MPS Network.

AIMS

  1. To act as an independent forum for MPS Societies and relevant patient associations at a European and global level, including supporting each other and emerging new patient organisations representing MPS.
  2. To promote the well-being of those affected by Mucopolysaccharide and related Lysosomal diseases through the best practices of clinical diagnosis, management and treatment.
  3. To promote public and professional awareness of Mucopolysaccharide and related Lysosomal diseases.
  4. To oversee the nominations for an MPS Society or relevant patient association to host the International Symposium on Mucopolysaccharide Diseases and to preside over the decision making, forward planning and reporting.
  5. To identify research priorities and potential collaborations and where appropriate, work in partnership with the academic community and the pharmaceutical industry.
  6. To develop relationships and partnerships with other Lysosomal Storage Disease Groups for the purposes of collaboration and joint learning.

OBJECTIVES

To award a “Life for MPS” award at each international MPS symposium in order to recognize those who have made significant contributions to the international MPS community.

MEMBERSHIP

Membership is only open to the one nationally recognised MPS Society or relevant patient association for each country globally. Up to two representatives from each accepted MPS Society or relevant patient association may attend the International MPS Network Meetings. Observers and translators may attend by prior agreement of the MPS International Network. Emerging new MPS Societies should apply for membership through the International MPS Network secretariat, with a final decision being taken by the International MPS Network.

There is no membership fee; however, member organisations are responsible for meeting the costs of their representatives’ attendance where this is not covered by the organisation hosting the meeting.

MEETINGS

The International MPS Network will meet at least once a year and where the opportunity presents itself twice a year. A meeting is only quorate when representatives of a minimum of eight member organisations from at least two continents are present.

RECORD KEEPING

There will be clear record keeping of the business of the International MPS Network and minutes of the meetings will be taken, distributed and approved. All decisions taken as part of the meeting and democratically taken will be respected and stand. Concerns over a decision reached may be raised as an agenda item at the next International MPS Network Meeting.

SECRETARIAT

The Secretariat for the International MPS Network will be c/o the MPS Society, MPS House, Repton Place, Amersham, Bucks HP7 9LP, UK. Telephone: 00 44 (0) 845 389 9901. Fax: 00 44 (0)845 389 9902 Email: c.lavery@mpssociety.co.uk until decided otherwise.