Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
3 days ago
LUPUS EUROPE

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.

What is the question you should have asked and you didn't?

What is the question you think physicians should answer without being asked?

#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
... See MoreSee Less

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus. 

What is the question you should have asked and you didnt?

What is the question you think physicians should answer without being asked?
 
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.

Comment on Facebook

Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament

Recording your appointment helps

Medication side effects short and long twem

6 days ago
LUPUS EUROPE

More good news for the #lupus commnunity!!

Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.

ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
... See MoreSee Less

6 days ago
LUPUS EUROPE

Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!

www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
... See MoreSee Less

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
  • Dalila Tremarias
    Dalila Tremarias
    Board Member
  • Annemarie Sluijmers
    Annemarie Sluijmers
    Vice-Chair, Secretary
  • Elfriede Wijsma
    Elfriede Wijsma
    Vice-Chair, 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.

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
3 days ago
LUPUS EUROPE

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.

What is the question you should have asked and you didn't?

What is the question you think physicians should answer without being asked?

#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
... See MoreSee Less

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus. 

What is the question you should have asked and you didnt?

What is the question you think physicians should answer without being asked?
 
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.

Comment on Facebook

Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament

Recording your appointment helps

Medication side effects short and long twem

6 days ago
LUPUS EUROPE

More good news for the #lupus commnunity!!

Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.

ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
... See MoreSee Less

6 days ago
LUPUS EUROPE

Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!

www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
... See MoreSee Less

Jeanette Andersen
Chair

About Jeanette

Jeanette Andersen is 43 years old, lives in Denmark and has a Master’s degree in German and Philosophy from the University of Copenhagen. In 2011 she was diagnosed with SLE, which (in combination with a lot of comorbidities) forced her to go into early retirement. Since then, she has immersed herself in the role of a volunteer in the area of rheumatology with a special focus on patient engagement in clinical research.

She is the Chair of Lupus Europe, a EUPATI trained patient expert on medicines Research & Development and the leader of the Lupus Europe Patient Advisory Network. She is also a patient representative (or e-PAG) and a Steering Committee Member in ERN ReCONNET as well as leader in the Danish Lupus group underneath Gigtforeningen (the Danish Rheumatism Association). She is a EULAR PARE Committee Member and Leader of the Editorial Board and Edgar Stene Prize working groups. She also sits on the ACTion Council on patient engagement in rheumatology research.

She has developed an exercise programme for lupus patients, that has been endorsed by both ERN and EULAR and at present she has a focus on developing educational materials on better communication between doctors and patients.

Dalila Tremarias
Board Member

About Dalila

Dalila lives in Cardiff, Wales. Since very young she had great interest in medicine. Her SLE diagnosis as a child increased her admiration for the healthcare service even more.  She holds a BA in Modern Languages with further studies in International Business and works as a legal translator. She took her first steps in research when she was living in England, where she was treated by lupus experts. Those experts helped her to understand more about lupus and how to manage it. Through this journey she also learnt about the vital role that lupus patients have in research and how today’s involvement in research could shape and improve tomorrow’s lupus treatment and care.

 

In those 20 years since initial diagnosis, Dalila has been able to experience the positive impact that a support network can have on the quality of life and mental health of those with lupus. It is of great importance for her that lupus patients receive mental health support and that it becomes part of their care and lupus journey. She runs a local support group for Lupus UK and invites those in the area to join their meetings and awareness events.

 

She is highly committed to research and volunteers as a PAN member for Lupus Europe. She is also a lay reviewer for Health and Care Research Wales, NIHR, different universities, and charities across the UK. As a new Board Member for Lupus Europe board, she is looking forward to learning and collaborating with research projects in Europe.

Annemarie Sluijmers
Vice-Chair, 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.

Elfriede Wijsma
Vice-Chair, 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…