ABOUT LUPUS EUROPE

Who are we?

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We are a non profit independent organisation. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. We use the WHO (World Health Organisation) definition of Europe as a region, rather than a political entity.

Since our humble beginnings, we have grown to represent most of Europe’s main countries which, in turn, represent over 30,000 patients in their respective memberships. We have observed the gradual shift in position, where formerly patients were often side-lined and not thought to be capable of contributing to their own care, to the current-day-thinking which aims for increasing patient involvement and communication at all levels.

LUPUS EUROPE 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. We see research and clinical trials as key to the future of lupus patients and work with all stakeholders to improve the quality and efficiency of all lupus research.

LUPUS EUROPE is a registered UK charity (803768).

MISSION

To be the voice of lupus in Europe and empower the national organisations for people living with lupus.

VISION

A fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.

CORE VALUES

Transparency, Democracy, Independence, Impartiality, Vitality

OUR TEAM

Board of Trustees & Secretariat

The LUPUS EUROPE board is composed of six trustees who are all either lupus patients themselves or relatives of a lupus patient. They all work on an entirely voluntary basis. Working alongside them the part-time secretariat ensures administrative support.

In addition to the usual trustees, LUPUS EUROPE may call on co-opted trustees for specific projects. Again, all co-opted trustees are volunteers.

  • Jeanette Andersen
    Jeanette Andersen
    Chair
  • Marisa Costa
    Marisa Costa
    Trustee
  • Annemarie Sluijmers
    Annemarie Sluijmers
    Secretary
  • Anne Charlet
    Anne Charlet
    Vice-Chair
  • Elfriede Wijsma
    Elfriede Wijsma
    Trustee
  • Kirsi Myllys
    Kirsi Myllys
    Treasurer
  • Amy Somers
    Amy Somers
    Admin Support
  • Alain Cornet
    Alain Cornet
    Secretariat

ETHICS & GOVERNANCE

The three C’s

Council

The Council is made up of the national delegates who represent their individual countries. The delegate is also very often the international person of contact for that country. The Council meets once a year during the annual LUPUS EUROPE convention. The Council is responsible for tasks such as:

  • nominating qualified people for election to trustee positions
  • electing trustees
  • setting annual membership subscription rates for both full and associate member organisations
  • deciding on amendments to the constitution, on dissolution or on removal of a trustee

Code of Conduct

LUPUS EUROPE applies the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Good Practice on relationships between the pharmaceutical industry and patients’ organisations. The same Code of Good Practice will be upheld in relation to any funding received from any other source. Please also read our code of conduct for volunteers or trustees.

LUPUS EUROPE’s accounts are audited every year by an independent accountant, whose report is published, together with our financials on the website of the Charities Commission of England and Wales. To find our  financial reports of the past 5 years, simply follow this link.

Constitution

Our Constitution is approved by the UK Charities Commission, and some parts have been adjusted in November 2017 to ensure we remain on top of external developments and needs.

LUPUS EUROPE CONSTITUTION amended Nov 2017

OUR HISTORY

The story so far

  • 2017 An updated Strategic plan

    The convention unanimously adopted LUPUS EUROPE’s revised Strategic plan, including the creation of Pan-European work groups and a Patient Advisory Network. The new structure will allow for more ambitious goals over the next 5 years.

  • 2015 Establishing a World Lupus Federation

    Lupus Europe invited lupus groups from around the world to join its 2015 convention in Vienna, coinciding with the International Congress on lupus, so that a new World Lupus Federation could be created, uniting people with lupus from every continent.

  • 2012 Lupus Europe’s Vision

    The 2012-2017 Strategic plan defines LUPUS EUROPE’s vision as “A fulfilling life for all people living with lupus in Europe until we have reached a world without lupus”.

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STRATEGIC PLAN 2023

LUPUS EUROPE has an organisational framework in which the plan for the third strategic period, 2018 to 2023, has now come into effect following the 2017 annual convention.

For the five year duration of the Strategic plan will concentrate on the following 3 strategic objectives: 

  1. PEOPLE WITH LUPUS in Europe participate in, and benefit from, lupus research
  2. MEMBER ORGANIZATIONS are enthusiastic and empowered
  3. LUPUS EUROPE is heard and acting

STRATEGIC PLAN

PROJECTS & WORK

To deliver our Strategic plan, we have initiated, and continue to initiate  several projects on our own. Our key on going initiatives include

  • The establishment of a Patient Advisory Network (PAN)
  • The active collaboration to EULAR (EUropean League Against Rheumatism) Recommendations – Patient’s Version
  • Living with Lupus – an electronic survey globally, where the results are presented at EULAR and International Congress of SLE
  • The establishment of Patient Panels, where people living with lupus around Europe exchange thoughts on a critical topic
  • The “Kick Lupus Word cloud” (2018) and “Unmasking lupus” (2015) contests, where people living with lupus use art to express important insights on Lupus.

Learn more about LUPUS EUROPE Projects & Activities…

Jeanette Andersen
Chair

About Jeanette

Jeanette is from Denmark. She has a master’s degree in German and Philosophy and several years of experience as a teacher at higher education. She was diagnosed with SLE, APS, Sjögren´s Syndrome etc. in 2011 and had to go into early retirement in 2012.

She has worked for the Danish national Lupus group since 2012.

Jeanette has taken a special interest in the problems, which young lupus patients (age 18-35) face with regards to education, work and starting a family and is also a co-founder of the EULAR YoungPARE Working Group.

In her role as chair for LUPUS EUROPE she participates in Conferences, Meetings, seminars and Congresses like the EULAR congress, where she follows the latest research and spreads the word about LUPUS EUROPE´s work.

Jeanette has recently completed the EUPATI patient expert research partner programme, which focuses on patients’ involvement in research and is a member of Lupus Europe´s Patient Advisory Network (PAN).

She currently sits on the EULAR Editorial Board and Stene Prize group.

Marisa Costa
Trustee

About Marisa

Marisa is from Portugal and was diagnosed with Lupus at 15 years old. She has a master´s degree in Communication Sciences and her PhD in Communication and Arts its being a work in progress through the years. She hopes some day it will have an end!

She was invited to join the Portuguese lupus association in 2018 because of her work for the awareness of Lupus using what she loves to do … running!

She is a master athlete since 2016 and she usually represents her country in European and world championships. She started running small distances and in 2020 she was able to run her first marathon. She believes in the power of the mind to control the body and reach balance.

About Lupus Europe all she can promise is her commitment, dedication, and willingness to set an example for all those who, like her, suffer from serious health problems. She wants to show that everything remains possible when we believe and do not resign ourselves, nor do we lower our arms in the face of battle.

What we manage to do every day is within our reach and is up to us. Every day there are small victories to conquer.

 

Annemarie Sluijmers
Secretary

About Annemarie

Annemarie is from the Netherlands, she lives in a village east of Amsterdam. She was diagnosed with Skin Lupus and Sjögren´s Syndrome in 2001.

In her working life, she worked as a legal secretary (for over 15 years) and a paralegal (for 4 years) in an international law firm. As volunteer, she works at the local House Cinema (“Filmhuis”). Since 2011 she has also worked as volunteer for the Dutch Lupus Foundation (NVLE) in the Lupus APS Committee and for the last three years as general member for the board (dealing with the administration of (new) members of the foundation).

Annemarie has a special interest in skin involvement with lupus. She wants to raise the voice for patients in general. In 2017, she started as Co-opt advisor for Lupus Europe in an EPF Task Force and as a representative for Lupus Europe at the Global Skin 2017 Conference of IADPO.

Anne Charlet
Vice-Chair

About Anne

Anne got involved in a lupus patient group in 2010 when her 16 year daughter was diagnosed with lupus. As a French resident, she first joined the Lupus France board, but then, as a native English speaker, they asked her to represent them at the LUPUS EUROPE convention, and finally on the LUPUS EUROPE board. She currently concentrates specifically on fundraising to ensure the sustainability of the organisation.

Anne has a strong interest in cross-cultural understanding and worked in the USA, UK and Germany before settling with her family in France, where she now provides Global Marketing for a large European IT service provider.

Elfriede Wijsma
Trustee

About Elfriede

Elfriede is from the Netherlands, she was diagnosed with CDLE (skin Lupus) in 2000 after having wrong diagnosis several times. Since her diagnosis, living with Lupus on a daily base as meaningful as possible, became her challenge. Not just for herself but for Lupus patients in general.

This is also her motivation to join the Lupus Europe Board.

Elfriede has a bachelor’s degree in Social Work and a postgraduate degree in Service Management. She has worked for a long time as manager in several organizations for the homeless, residential youth care and crisis and disaster relief.

Elfriede founded her own company 6 years ago, together with a number of colleagues.

The company develops and produces innovative sun protection products for people with sun-related conditions. In addition, she gives presentations about living with UV-sensitive skin.

As a volunteer, Elfriede has experience within other patient associations, and as a member of the communications group in Lupus Europe

Elfriede is particularly interested in all aspects of patient empowerment and in Skin Lupus, in particular the overlap in symptoms between patients with Skin Lupus and SLE.

Kirsi Myllys
Treasurer

About Kirsi

Kirsi has a background in English language training and teaching. After stepping down due to ill health, she then retrained as an accountant. She has an MA in English Philology and Theoretical Philosophy and a Vocational qualification in Business and Administration. Kirsi is a long-standing volunteer, having worked as a producer in theatre productions in Helsinki before becoming a volunteer for Lupus Finland, and later on, LUPUS EUROPE.

Kirsi started out as Convention Manager for LUPUS EUROPE before becoming Treasurer in 2015. She continues to focus on the organisational aspects of the convention alongside her treasurer’s duties.

English language training and teaching for 15 years, 3 years of translating (Fi-Eng-Fi).

Voluntary work: a producer (5 productions, a theatre festival) and Chair (3yrs) of the Finn-Brit Players, an amateur English-speaking theatre group in Helsinki.

MA (English Philology, Theoretical Philosophy), Vocational Qualification in Business and Administration

Amy Somers
Admin Support

About Amy

Coming soon…

Alain Cornet
Secretariat

About Alain

Alain worked as a Global Finance executive with Procter & Gamble for over 32 years, in positions such as regional CFO for the Balkans, Head of Taxation for Europe, Middle East and Africa, and finally Head of Global Indirect Taxation. In parallel he joined the OECD WP9 Technical Advisory Group in 2008 and in that role, was one of the key contributors to the OECD International VAT guidelines, and a speaker in various International OECD conferences. This Business and International Organisation background gave him significant experience in the areas of Finance, Strategy, running international operations, working with Governments, lobbying, negotiation and presentation skills, … In 2015, he decided to gradually shift his career focus to supporting charities, a move that will be fully completed by the end of 2017. As husband to Bernadette, Chair of the French-speaking Belgian Lupus group, he has been involved with the Lupus patient community for over 10 years. He served as LUPUS EUROPE’s Treasurer from 2012 to 2014. In 2015, he became General Secretary of LUPUS EUROPE, and in that capacity, advises and supports the board in its responsibilities, and manages the day to day operations of LUPUS EUROPE, as well as various projects such as the Patient panels or the 2017 Research Workshop.

Alain is currently engaged in multiple projects including representing the Lupus Community in the European reference Network ReCONNET, being part of European Joint program on Rare Disease Work Paper 20 on Clinical trials, being Member of the EULAR PARE School of rheumatology, and serving on the steering team of various Congresses.