LUPUS 100
Answers to the most important questions about lupus, verified by world renowned lupus doctors in Europe.
LUPUS CHALLENGES
LUPUS MANIFESTATION
LUPUS MANAGEMENT
LIVING WITH LUPUS
LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. It is a non-profit independent organisation, aiming to support and empower national member organisations, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level.
Since its humble beginnings in 1989, LUPUS EUROPE has grown to represent most of Europe’s main countries which, in turn, represent over 30,000 patients in their respective memberships. It is now considered a valued partner at medical conferences, in European healthcare organisations fighting for wider patients’ rights, and in Europe-wide initiatives aimed at improving healthcare and setting “standards of care” for lupus patients. LUPUS EUROPE is recognized by the EMA (European Medicines Agency) and regularly invited to provide patient views on new treatment related questions. It is important for our community that we not only act at national level, but also bring the patient voices all the way to cross border care bodies and initiatives.
LUPUS EUROPE’s vision is “A fulfilling life for all people with lupus in Europe, until we have reached a world without lupus”. This vision directs its key strategies: (a) that people with lupus participate in, and benefit from, lupus Research; (b) that member organisations are enthusiastic and empowered, and (c) that Lupus Europe is heard and active in key projects. These 3 strategic goals are themselves divided into a number of projects pursued by LUPUS EUROPE, its members and volunteers.
LUPUS EUROPE is a volunteer-based organisation. It is led by a 7-person strong volunteer Board of Directors, all living with lupus themselves or closely related to a person living with lupus. A small secretariat – itself also having direct experience of the disease – supports the Board, and a network of around 40 volunteers is engaged on multiple projects carefully selected to support our vision and key strategic objectives.
For more information about LUPUS EUROPE, visit lupus-europe.org
The website also includes:
APPENDIX 1 - CRITERIA FOR SYSTEMIC LUPUS ACTIVITY
APPENDIX 2 - CLASSIFICATION CRITERIA FOR SLE (SYSTEMIC LUPUS ERYTHEMATOSUS)
APPENDIX 3 - LUPUS DRUGS
APPENDIX 4 - LUPUS DRUGS & PREGNANCY AND BREASTFEEDING
APPENDIX 5 - THE LIST OF HCPS IN EUROPE
APPENDIX 6 - LEXICON
APPENDIX 7 - LUPUS EUROPE
