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, until 2020 was a UK based charity (803768). From 2021 LUPUS EUROPE moved and became a Belgium based non-profit organisation (0758.650.658).

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 Directors & Secretariat

The LUPUS EUROPE board is composed of five directors 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 directors, LUPUS EUROPE may call on co-opted advisors for specific projects. Again, all co-opted advisors are volunteers.

  • Jeanette Andersen
    Jeanette Andersen
    Chair
  • Marisa Costa
    Marisa Costa
    Board Member
  • Annemarie Sluijmers
    Annemarie Sluijmers
    Secretary
  • Anne Charlet
    Anne Charlet
    Vice-Chair
  • Elfriede Wijsma
    Elfriede Wijsma
    Treasurer
  • Amy Somers
    Amy Somers
    Board Member
  • Aldevina Sturienė
    Aldevina Sturienė
    Board Member
  • Alain Cornet
    Alain Cornet
    Secretariat
  • Zoe Karakikla-Mitsakou
    Zoe Karakikla-Mitsakou
    Project Manager

ETHICS & GOVERNANCE

The General Assembly 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 General Assembly meets once a year during the annual LUPUS EUROPE convention. The General Assembly is responsible for tasks such as:

      • nominating qualified people for election to director positions
      • electing directors
      • 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 director

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.

With regards to decision making, we highly value our member’s contributions. Every year, our action plan for the next year is reviewed and discussed with our members as a key element of our general meeting. This is also the audience where we discuss significant “policy” matters, items impacting our vision or strategies. decisions at general assembly are made by Majority vote, as foreseen in our statutes.

During the year, the patient voice is gathered to orient our action in specific projects. this is done through our PAN (PAtient Advisory Network), or through on line consultations and surveys. With regards to decisions on the day to day running of the organistaion, decisions are made by majority vote of the board, as foreseen in our “trustee code of conduct”. Staff members attending board meetings, or board members with a conflict of interest, if any, do not vote on such decisions. If significant changes need to be made to our approved plans, the board consults members by email, social media dedicated network or calls or at the occasion of a webinar.

For more, please also read our code of conduct for volunteers or trustees.

When LUPUS EUROPE was a UK charity, our constitution was approved by the UK Charities Commission; some parts of the constitution were adjusted in November 2017 to ensure we remained on top of external developments and needs.

LUPUS EUROPE CONSTITUTION amended Nov 2017

From 2021 LUPUS EUROPE moved and became a  Belgium based non-profit organisation. Our Articles of Association can be found here:

Articles of Association 2021 

LUPUS EUROPE ‘s accounts are audited every year by an independent accountant.To find our  financial report, simply follow this link.

In 2020, 88.6% of the funds raised by LUPUS EUROPE were provided by the pharmaceutical industry. To maintain its independence, Lupus Europe has fixed a ceiling of maximum 25% of its fund to come from one partner.  With the development of new sponsors, we expect to structurally bring single sponsor input to no more than 20% by 2022. In 2020, we achieved this objective already as the highest contribution from a single company was reached by  GSK with 17.9%.

Funding in 2020 by origin

OUR HISTORY

The story so far

  • 2021 Headquarters move to Brussels

    As Brexit unfolded, we relocated to Brussels, close to many of our partner groups, to ensure an optimal support to all people living with lupus in Europe

  • 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.

202120172015

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

Year after year, we progress towards the goals we have set.  Our last activity report is available HERE.

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…

GET INVOLVED

OUR SPONSORS

Our belief is that we need to work alongside pharma, healthcare professionals, academia and other stakeholders in order to achieve our vision. We cannot do this alone.

OUR MEMBERS

The members of LUPUS EUROPE are national and other properly-accredited Lupus Groups in Europe. At this moment 22 countries with 24 organisations representing about 40,000 patients are registered as Full members, and an extra 6 countries are associate members.

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2 days ago
LUPUS EUROPE

Ever wondered about volunteering? Find out all about volunteering for Lupus Europe on Wednesday, 02/02/22 at 20:00CET (i.e. Paris time).

Don't miss this exciting webinar!

Send an e-mail to zoe@lupus-europe.org to register
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Ever wondered about volunteering? Find out all about volunteering for Lupus Europe on Wednesday, 02/02/22 at 20:00CET (i.e. Paris time). 

Dont miss this exciting webinar! 

Send an e-mail to zoe@lupus-europe.org to register

Comment on Facebook

Hi Yoli and thank you for your comment and your interest in the webinar! The webinar will be in English. 🙂

Buenas tardes. En que idioma se va a realizar?

1 week ago
LUPUS EUROPE

LUPUS EUROPE • Newsletter • January 2022
Have you read our latest newsletter?
Read all about it by going to mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january202201
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Comment on Facebook

🙏🏻Kæmpe flot arbejde med nyhedsbrevet👍🏻

3 weeks ago
LUPUS EUROPE

Foula Markidou, former Lupus Europe Trustee, has passed away. With a heavy heart, we are sharing the news with you.

"𝘐𝘵 𝘪𝘴 𝘣𝘺 𝘩𝘦𝘳 𝘱𝘢𝘵𝘪𝘦𝘯𝘤𝘦, 𝘩𝘶𝘮𝘢𝘯𝘪𝘵𝘺 𝘢𝘯𝘥 𝘱𝘳𝘰𝘧𝘰𝘶𝘯𝘥 𝘬𝘪𝘯𝘥𝘯𝘦𝘴𝘴 𝘵𝘩𝘢𝘵 𝘴𝘩𝘦 𝘪𝘯𝘴𝘱𝘪𝘳𝘦𝘥 𝘴𝘰 𝘮𝘢𝘯𝘺 𝘵𝘰 𝘨𝘦𝘵 𝘪𝘯𝘷𝘰𝘭𝘷𝘦𝘥 𝘪𝘯 𝘵𝘩𝘦 𝘧𝘪𝘨𝘩𝘵 𝘧𝘰𝘳 𝘭𝘶𝘱𝘶𝘴 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴, 𝘸𝘩𝘪𝘭𝘦 𝘤𝘳𝘦𝘢𝘵𝘪𝘯𝘨 𝘢 𝘳𝘪𝘤𝘩 𝘢𝘵𝘮𝘰𝘴𝘱𝘩𝘦𝘳𝘦 𝘰𝘧 𝘤𝘢𝘳𝘪𝘯𝘨 𝘢𝘯𝘥 𝘴𝘦𝘳𝘦𝘯𝘪𝘵𝘺 𝘢𝘳𝘰𝘶𝘯𝘥 𝘺𝘰𝘶.

𝘚𝘩𝘦 𝘩𝘢𝘴 𝘣𝘦𝘦𝘯 𝘰𝘯𝘦 𝘰𝘧 𝘵𝘩𝘦 𝘱𝘪𝘭𝘭𝘢𝘳𝘴 𝘰𝘧 𝘵𝘩𝘦 𝘌𝘶𝘳𝘰𝘱𝘦𝘢𝘯 𝘭𝘶𝘱𝘶𝘴 𝘤𝘰𝘮𝘮𝘶𝘯𝘪𝘵𝘺 𝘢𝘯𝘥 𝘸𝘦 𝘸𝘪𝘭𝘭 𝘮𝘪𝘴𝘴 𝘩𝘦𝘳 𝘥𝘦𝘦𝘱𝘭𝘺.

𝘖𝘶𝘳 𝘥𝘦𝘦𝘱𝘦𝘴𝘵 𝘤𝘰𝘯𝘥𝘰𝘭𝘦𝘯𝘤𝘦𝘴 𝘵𝘰 𝘩𝘦𝘳 𝘧𝘢𝘮𝘪𝘭𝘺 𝘢𝘯𝘥 𝘧𝘳𝘪𝘦𝘯𝘥𝘴 𝘢𝘯𝘥 𝘩𝘦𝘳 𝘭𝘶𝘱𝘶𝘴 𝘧𝘢𝘮𝘪𝘭𝘺.

𝘖𝘯 𝘣𝘦𝘩𝘢𝘭𝘧 𝘰𝘧 𝘓𝘶𝘱𝘶𝘴 𝘌𝘶𝘳𝘰𝘱𝘦"
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Foula Markidou, former Lupus Europe Trustee, has passed away. With a heavy heart, we are sharing the news with you.

𝘐𝘵 𝘪𝘴 𝘣𝘺 𝘩𝘦𝘳 𝘱𝘢𝘵𝘪𝘦𝘯𝘤𝘦, 𝘩𝘶𝘮𝘢𝘯𝘪𝘵𝘺 𝘢𝘯𝘥 𝘱𝘳𝘰𝘧𝘰𝘶𝘯𝘥 𝘬𝘪𝘯𝘥𝘯𝘦𝘴𝘴 𝘵𝘩𝘢𝘵 𝘴𝘩𝘦 𝘪𝘯𝘴𝘱𝘪𝘳𝘦𝘥 𝘴𝘰 𝘮𝘢𝘯𝘺 𝘵𝘰 𝘨𝘦𝘵 𝘪𝘯𝘷𝘰𝘭𝘷𝘦𝘥 𝘪𝘯 𝘵𝘩𝘦 𝘧𝘪𝘨𝘩𝘵 𝘧𝘰𝘳 𝘭𝘶𝘱𝘶𝘴 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴, 𝘸𝘩𝘪𝘭𝘦 𝘤𝘳𝘦𝘢𝘵𝘪𝘯𝘨 𝘢 𝘳𝘪𝘤𝘩 𝘢𝘵𝘮𝘰𝘴𝘱𝘩𝘦𝘳𝘦 𝘰𝘧 𝘤𝘢𝘳𝘪𝘯𝘨 𝘢𝘯𝘥 𝘴𝘦𝘳𝘦𝘯𝘪𝘵𝘺 𝘢𝘳𝘰𝘶𝘯𝘥 𝘺𝘰𝘶.

𝘚𝘩𝘦 𝘩𝘢𝘴 𝘣𝘦𝘦𝘯 𝘰𝘯𝘦 𝘰𝘧 𝘵𝘩𝘦 𝘱𝘪𝘭𝘭𝘢𝘳𝘴 𝘰𝘧 𝘵𝘩𝘦 𝘌𝘶𝘳𝘰𝘱𝘦𝘢𝘯 𝘭𝘶𝘱𝘶𝘴 𝘤𝘰𝘮𝘮𝘶𝘯𝘪𝘵𝘺 𝘢𝘯𝘥 𝘸𝘦 𝘸𝘪𝘭𝘭 𝘮𝘪𝘴𝘴 𝘩𝘦𝘳 𝘥𝘦𝘦𝘱𝘭𝘺.

𝘖𝘶𝘳 𝘥𝘦𝘦𝘱𝘦𝘴𝘵 𝘤𝘰𝘯𝘥𝘰𝘭𝘦𝘯𝘤𝘦𝘴 𝘵𝘰 𝘩𝘦𝘳 𝘧𝘢𝘮𝘪𝘭𝘺 𝘢𝘯𝘥 𝘧𝘳𝘪𝘦𝘯𝘥𝘴 𝘢𝘯𝘥 𝘩𝘦𝘳 𝘭𝘶𝘱𝘶𝘴 𝘧𝘢𝘮𝘪𝘭𝘺.

𝘖𝘯 𝘣𝘦𝘩𝘢𝘭𝘧 𝘰𝘧 𝘓𝘶𝘱𝘶𝘴 𝘌𝘶𝘳𝘰𝘱𝘦

Comment on Facebook

Thank you for the heartfelt posting. Foula was more than my sister in law, she was the sister I wished I had. We deeply grieve losing her. Foula had an incredible inner strength in the long battle with lupus, and all through her pain she always gave her best to help others. We will always miss her! 💔

We pray may her soul rest in the abode of God.🙏🏼

NUOŠIRDI UŽUOJAUTA🙏

Meus mais sinceros pêsames pelo falecimento da sra Deus lhe conceda o descanso eterno e paz a sua alma 🙏

Descanse em Paz 🙏🙏

Meus sinceros sentimentos a amigos e familiares, que Deus conforte os vossos corações!

Desde Asociación Madrileña de Lupus os enviamos un fuerte abrazo para todos los compañeros de LUPUS EUROPE y en especial para la familia de Foula Markidou. Descanse en paz

Descanse em paz

Descanse em Paz 🙏🙏

Meus sentimentos

Descanse em paz

Os meus sentimentos para toda a família bjs

Os meus sentimentos

Lo siento D.E.P

Meus sentimentos

RIP 🙏🏻🙏🏻

Lo siento mucho 😢 D. E. P.

RIP

RIP🙏

Lo siento muchísimo .

🦋🦋🦋 vuela alto, bella mariposa !!!

D.E.P.

D.E.P 🙏

D.E.P.

Una mariposa 🦋 perdio la batalla, descansa en los brazos de cristo

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3 weeks ago
LUPUS EUROPE

Congratulations to Elaine Holland, the newly elected Chair of Lupus UK.

A big thank you to Kevin Weston for a great collaboration in the past years. We are looking forward to continuing our great collaboration with Lupus UK in the future!After serving two terms as Chair of LUPUS UK, Kevin Weston has stepped down from the role. We are extremely grateful for his dedicated service and everything he has achieved during his time as Chair.

The Board of Trustees has appointed Elaine Holland as the new Chair of LUPUS UK. Learn more about Elaine and her vision for the future in this article. www.lupusuk.org.uk/introducing-new-chair/
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Congratulations to Elaine Holland, the newly elected Chair of Lupus UK. 

A big thank you to Kevin Weston for a great collaboration in the past years. We are looking forward to continuing our great collaboration with Lupus UK in the future!
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 is a PARE board member and sits on the EULAR Editorial Board and Stene Prize group.

Marisa Costa
Board Member

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
Treasurer
Elfriede Wijsma

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.

Amy Somers
Board Member

Coming soon…

Aldevina Sturienė
Board Member

1965-07-02, Kaliningrad region, Russia

1972  – 1979 year , Vilkaviškis secondary school.

1979 – 1983 year, Vilkaviškis V. Vitkauskas secondary school, graduated with gold medal

1984 –  1989 year,  Klaipeda University, engineer of food processing equipment

1989  –  1991 year,  lecturer at the  Klaipėda University

1994 – 2020 director at JSC “Pomona”

2016 till now leader of association “Meno atmintis” (non-profit organization)

2018 till now leader of association Lupus Lithuania

Alain Cornet
Secretariat

About Alain

Secretariat LUPUS EUROPE: 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, and Treasurer of EURORDIS.

Zoe Karakikla-Mitsakou
Project Manager

Coming soon…

LUPUS EUROPE Uniting people with Lupus throughout Europe
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