WHAT WE DO
OUR MISSION &VISION
The Mission of MPS Europe is to enhance the quality of life of persons affected with Mucopolysaccharide (MPS) and related diseases across the territory of Europe.
The Vision of MPS Europe is that all persons affected with MPS and related diseases are:
- recognised in their health care and social systems
- have access to early diagnosis, clinical management, interventions and treatment
- that their representatives participate as equal partners in all relevant bodies and committees associated with MPS and related diseases
OUR GOALS & ACTVITIES
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;
Oversee and stimulate the organisation of the biannual international MPS and related diseases symposium;
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, bodies and organisations in the interest of MPS and related diseases;
Represents MPS and related diseases patients at the European Medicines Agency and other relevant EU institutions and bodies;
- Organises lectures, workshops, seminars and conferences;
- Educates and empowers MPS and related diseases patients and patient representatives;
Promotes the sharing and adaptions, publishes and distributes promotional, informational, professional and other materials for early diagnosis, clinical management, interventions, treatment, clinical studies and standards of care for MPS and related diseases;
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;
Negotiates with decision and policy-makers in the field of prevention, early and prenatal diagnostics, timely and adequate treatment of persons affected with MPS and related diseases;
- 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 national MPS Societies in advocating access to medicines;
Supports establishing MPS Societies in countries where so far none exist;Develops cooperation and exchange of experiences with international MPS organisations and networks and actively participates in their work.