Are there any associations of lupus patients?

Living with lupus can be a bumpy road, on which traveling alone is hard. In almost each European country, people living with lupus and their close relatives have created patient organisations, where they can share their experience, obtain quality information, raise awareness of the disease, support research programmes, and offer a helping hand to those (often newly diagnosed) that face difficulties.

Each country group has its specificities. In large countries, national lupus groups often have local “chapters” disseminated all over the country. Thanks to this, they create a small community, where people understand each other due to similarities in their life experience.

At the European level, LUPUS EUROPE is bringing together the existing national patient groups to work together on international issues, foster exchange between countries, support each other in difficult times, bring a united voice on complex questions, inform national groups on important developments, or coordinate the work of patient experts.

In Europe, with only limited exceptions, lupus patients’ groups are fully volunteer based. They are led by individuals living with lupus, their close relatives, or both, and benefit from the benevolent support of the best lupus doctors. They provide information that is reliable and a varying range of services that can help patients. They also provide volunteering opportunities to those that wish to help the community.

Patients and relatives can find contact details of national groups on LUPUS EUROPE website or in Appendix 8 of this book. They can also talk about support groups with their doctor which will often be in contact with the national organisation.

  • At national and European levels, patient organisations exist to bring together those affected by the disease
  • They offer a varying range of services to support the community
  • Joining a lupus group can help people living with lupus access quality information

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