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

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ.

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #kicklupus with prevention?
... See MoreSee Less

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ. 

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

๐ŸŒŸ Calling all Lupus Patient Organisation Volunteers! ๐ŸŒŸ

๐Ÿ—ฃ๏ธ Your Voice Matters!

We want to hear from YOU!

โ“ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! ๐Ÿ’Ž

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

โœ๏ธ You can answer in English or in your own language.

Ready to share your thoughts?

๐Ÿ”— Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

๐Ÿค— Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! ๐Ÿ’ช
... See MoreSee Less

1 CommentComment on Facebook

๐Ÿคท‍โ™‚๏ธ

4 weeks ago
LUPUS EUROPE

๐Ÿ“† New month, new challenge!

๐Ÿ As the calendar flips to November, our #kicklupus campaign has a new theme!

๐Ÿค” Can you guess what this month's theme is all about?

๐Ÿ’ก Hint: It's all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? ๐Ÿ’ช
... See MoreSee Less

๐Ÿ“†  New month, new challenge!

๐Ÿ As the calendar flips to November, our #KickLupus campaign has a new theme! 

๐Ÿค” Can you guess what this months theme is all about?

๐Ÿ’ก Hint: Its all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? ๐Ÿ’ช

1 CommentComment on Facebook

๐Ÿ’ช๐Ÿป๐Ÿ€

1 month ago
LUPUS EUROPE

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLet's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients can't receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients cant receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment

ABOUTย 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, Empowerment

OURย 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 Sturienฤ—
    Aldevina Sturienฤ—
    Board Member
  • Alain Cornet
    Alain Cornet
    Secretariat
  • Zoe Karakikla-Mitsakou
    Zoe Karakikla-Mitsakou
    Project Manager
  • Sara Badreh
    Sara Badreh
    PAN Coordinator

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 patientsโ€™ 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 aย  Belgium based non-profit organisation. Our Articles of Association can be found here:

Articles of Association 2021ย 

LUPUS EUROPE ‘s accounts are audited every year by an independent accountant.To find ourย  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.ย  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 byย  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 EUROPEโ€™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 planย will concentrate on the following 3 strategic objectives:ย 

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

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

PROJECTS & WORK

To deliver our Strategic plan, we have initiated, and continue to initiateย  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 โ€“ Patientโ€™s Version
  • Living with Lupusย โ€“ 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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Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
2 weeks ago
LUPUS EUROPE

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ.

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #kicklupus with prevention?
... See MoreSee Less

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ. 

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

๐ŸŒŸ Calling all Lupus Patient Organisation Volunteers! ๐ŸŒŸ

๐Ÿ—ฃ๏ธ Your Voice Matters!

We want to hear from YOU!

โ“ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! ๐Ÿ’Ž

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

โœ๏ธ You can answer in English or in your own language.

Ready to share your thoughts?

๐Ÿ”— Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

๐Ÿค— Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! ๐Ÿ’ช
... See MoreSee Less

1 CommentComment on Facebook

๐Ÿคท‍โ™‚๏ธ

4 weeks ago
LUPUS EUROPE

๐Ÿ“† New month, new challenge!

๐Ÿ As the calendar flips to November, our #kicklupus campaign has a new theme!

๐Ÿค” Can you guess what this month's theme is all about?

๐Ÿ’ก Hint: It's all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? ๐Ÿ’ช
... See MoreSee Less

๐Ÿ“†  New month, new challenge!

๐Ÿ As the calendar flips to November, our #KickLupus campaign has a new theme! 

๐Ÿค” Can you guess what this months theme is all about?

๐Ÿ’ก Hint: Its all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? ๐Ÿ’ช

1 CommentComment on Facebook

๐Ÿ’ช๐Ÿป๐Ÿ€

1 month ago
LUPUS EUROPE

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLet's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients can't receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients cant receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
Jeanette Andersen
Chair

About Jeanette

Jeanette Andersen has a Masters degree in German and Philosophy from the University of Copenhagen. In 2011 she was diagnosed with systemic lupus erythematosus, 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 a trustee in the Danish Lupus group underneath Gigtforeningen (the Danish Rheumatism Association). She is a EULAR PARE Committee Member and Chair of the subcommittee on Education & Research as well as 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 is focussing 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.ย  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 todayโ€™s involvement in research could shape and improve tomorrowโ€™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 Sjรถgrenยดs 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 (โ€œFilmhuisโ€). Since 2011 she has also worked as volunteer for the Dutch Lupus Foundation (NVLE) inย 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 bachelorโ€™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

Hello, I am Amy Somers. I joined Lupus Europe as part of the Patient Advisory Network (PAN) in June 2018 and I became a trustee in Sept 2021. I have completed EUPATIโ€™s training in medical research and development and I am a EUPATI fellow https://eupati.eu/ . I also volunteer with Lupus UK, and I am on their Northwest committee.

 

I live in the UK; I am originally from York but have lived in Manchester since leaving university. I worked for over 10 years in film and television as a camera assistant. I then retrained at Manchester college in patisserie. I bake for friends and family and occasional commissions when my health allows. I have worked as a barista on and off throughout university and beyond and LOVE coffee!

 

I was diagnosed with Lupus nephritis in 2012, at the time I was 27 working full time (60+ hrs) in a high paced all weathers physical job that I loved, my only symptom was swelling in my legs. It was a whirlwind, and I was very much in denial to the implications Lupus and being immune suppressed was going to have on my life. I did not engage with/ actively pushed away patient organisations until around 2016 when the burden of Lupus became overwhelming, and I realised I needed outside support. I also got a little nudge from my mum! From this I met an amazing group of Lupies who educated and supported me and my family in so many wonderful ways. They made me feel part of an inspiring community.

 

Currently, my active disease does not allow me to be employed full time, but I have found a renewed self-worth and sense of achievement in the work I do for Lupus charities, which I lost when I had to step back from my career. Volunteering gives me the freedom and understanding to rebuild and to learn what I am capable of.

 

I now have a real passion for educating myself in Lupus with an emphasis on medical research and development and can potentially see a new career path that I can incorporate in a symbiotic way with my Lupus.

Aldevina Sturienฤ—
Board Member

1965-07-02, Kaliningrad region, Russia

1972 ย โ€“ 1979 year , Vilkaviลกkis secondary school.

1979 โ€“ 1983 year, Vilkaviลกkis V. Vitkauskas secondary school, graduated with gold medal

1984 โ€“ ย 1989 year, ย Klaipeda University, engineer of food processing equipment

1989 ย – ย 1991 year, ย lecturer at the ย Klaipฤ—da University

1994 – 2020 director at JSC โ€œPomonaโ€

2016 till now leader of association โ€œMeno atmintisโ€ (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, โ€ฆ 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…

Sara Badreh
PAN Coordinator

About Sara

Sara is a biochemist by education who after spending some years conducting research in the field of immunology at the Karolinska Institute in Stockholm, Sweden moved to Brussels to work in Policy and Advocacy. She is a lupus patient herself and was diagnosed at the age of 16 and is very passionate about patient advocacy and how to best link the patient needs with the scientific perspective.

 

After giving birth to her first son, Elias, she started her own consultancy helping organisations with the management of multi-stakeholder projects at EU level. She might be a familiar face to some of you since she previously was part of the Lupus Europe board of trustees. Fun fact, during 2019 she ran the 5-borough series in New York to show that lupus patients can do anything they set their minds to. The 5-borough series is a series of races where you run all the 5 boroughs in New York during one year which includes 3 half-marathons, one 16 km and one 10 km races.