ERN ReCONNET questionnaire

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LUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire linked below to reach as many patients as possible.

The link below goes to the generic survey in English. The LUPUS EUROPE secretariat (secretariat@lupus-europe.org) also has links to the survey in Portuguese, Dutch, Romanian, Italian, German, Slovenian and should soon receive French.

Therapeutic Patient Education needs: Questionnaire for patients

We are asking you to please relay the link through your social media channels and encourage your members to participate.

Eular 2018

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Today is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals.

Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from around the world.”

Here are some pictures of the LUPUS EUROPE stand at Eular.

 

It’s World Lupus Day!

We at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share!

We would also like to repost a video made a couple of years ago about the importance of World Lupus Day.

LUPUS EUROPE becomes first associate member of SLEuro

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LUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society

We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society.

SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to SLE and related syndromes. Its members are individuals and institutions of any nationality who share its goals. Members must work in the scientific sector, have proven education and training, and practise a professional activity as researchers, clinicians, nurses or healthcare professionals.

The Society is building a community of clinicians and researchers interested in SLE at an international level, with special focus on engaging younger physicians in the field, promoting and coordinating the organisation of research and educational meetings on SLE and related syndromes, promoting equal access to the best standards of care for SLE patients across Europe, and facilitating research projects and clinical trials in SLE.

LUPUS EUROPE is a strong supporter of SLEuro whose goals are fully aligned with LUPUS EUROPE’s vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus”. Over a number of years, we have appreciated the relentless efforts of the academics and researchers at the origin of SLEuro. We cannot thank them enough for their dedication to Lupus Research, the building-up of a dialogue with lupus patient groups, and their every day care for all people living with lupus in  Europe. To all lupus doctors, we say a big THANK YOU, from the depth of our hearts.
We are proud and honoured to be Associate Members of SLEuro, a connection which symbolises and strengthens the partnership between self-help organisations for lupus patients in Europe and the Medical Community fighting against lupus.

 

EPF Roadmap for Universal Health Coverage for all

On December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve the UN sustainable development goals by 2030. She also stressed how important it is that all stakeholders, including patients, are involved across the board and that involvement is not limited to token gestures when it comes to designing new policies and looking at ways to reduce waste while improving the standard of care. This is all the more true when it comes to complex, chronic and rare diseases where care can be fragmented at best in any country, or almost non-existent in others.

Below you will find EPF’s press release, issued on 6th December.

TAKING ACTION: EPF’S ROADMAP TO ACHIEVE
UNIVERSAL HEALTH COVERAGE FOR ALL BY 2030

BRUSSELS, 6 December 2017 – EPF’s Campaign on Access to Healthcare for All calling for Universal Health Coverage by 2030 is coming to an end. During its closing Conference held today at the European Parliament, EPF presented its Roadmap and called for political change to ensure the rights of all patients are respected, to fight the health inequalities that persist across the EU, and to make health a priority in all policies at national and EU levels.

A tool for political guidance and a call for a long-term vision

Patients and citizens still face many unmet needs and unequal access to healthcare in all EU Member States. The output of EPF’s one-year campaign, EPF’s Roadmap to achieving universal health coverage for all by 2030 aims to tackle these in two main ways: “With this Roadmap we want to provide political guidance and recommendations to policy makers and politicians and to encourage them to have a longer-term vision and to reflect on what kind of society we want for the patient community and the wider public by 2030.” said Nicola Bedlington, EPF Secretary General.

What is EPF advocating for?

This Roadmap is intended mainly for EU and Member State decision and policy-makers and urges them to:

  • Provide equitable access to high-quality care to all patients, regardless of which country the live in or their country of origin;
  • Commit to invest sustainably in healthcare based on outcomes and added value;
  • Ensure the delivery of healthcare products and services that are affordable for all;
  • Promote better coordination of care and implement access to a holistic range of health and related services, ensuring that the package of services covered by the healthcare system is tailored to the needs of patients;
  • End the discrimination and stigma that patients face and make sure that no population is excluded.

UN SDGs as a compass, European health collaboration as a means

The Roadmap emphasises the importance and need to establish a transparent, inclusive and collaborative working process for the implementation of UHC and the UN SDGs.

“I we don’t get it right on the SDG on Health, then there is a risk that the other SDGs will fail. By the same token, if we don’t get it right in health collaboration post 2020, then some other big aspirations for the EU in terms of economics and growth will also fail,” added Nicola Bedlington.

This Roadmap echoes numerous initiatives taken by EPF to increase access for patients and citizens across Europe. On Monday 4th December, the EPF roundtable on cross-border healthcare provided an updated assessment of the current state of implementation of the directive from the perspective of patients, pointing out the gaps in access but also in the quality and safety of the care received across Europe.

Please find here EPF’s Roadmap entitled ‘Taking Action – A Roadmap to Achieving Universal Health Coverage for All by 2030’.

A factsheet giving a snapshot of this Roadmap has also been developed.

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Convention summary

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The LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker.

Benefitting from the Italian Lupus Clinic experience, we also covered other topics such as the treatment of women who wish to have children, the use of biologics, how specialised lupus Clinics operate, … Among those presenting, and working in one such clinic, was Fulvia Ceccarelli, a rheumatologist who is herself a lupus patient. It was certainly interesting to hear from someone who has experienced both sides of the doctor/patient relationship. We also took a closer look at the non-biological side of pain, fatigue and stress, with an excellent presentation by the president of the Belgian French Speaking association, Bernadette Van Leeuw. Davide Mazzoni, one of LUPUS EUROPE’s patient research partners, presented a new study which is looking at the possible effects of childhood trauma and the pathways into adulthood which can affect a person’s disease onset and progress. He then took us through the 2017 survey “AT HOME OR IN HOSPITAL?” on the preference for subcutaneous injection or intravenous infusion of biological therapy among Italian SLE patients.

Our Kick Lupus campaign had a wonderful boost with Jeanette Andersen taking us through the new exercise programme (soon to be released). Jeanette has herself made an incredible recovery from being unable to walk last year to jumping and running around this year following her back surgery. The programme has several levels and can be started even if unable to get out of bed.

The convention was also the opportunity to discuss the 2018-2023 strategic plan with our members. The plan, developed after extensive consultation with multiple stakeholders provides us with a clear path for the years ahead, in the pursuit of our vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.” The Strategic plan discussions were concluded by the adoption of the new LUPUS EUROPE logo. Our many thanks go to Patrick and Sandra from setfire.to, the pro-bono sponsors who designed the logo for us and are now finalising our new website. They have clearly understood what LUPUS EUROPE Stands for: while retaining the symbolic lupus butterfly, it has a vibrant person at its core – just as we have our members and their members at the very heart of our work. We very much wanted a symbol of energy and hope, reflecting the already significantly better outlook for lupus patients today and all our hopes for the future.

This year, Kirsten Lerstrøm, LUPUS EUROPE chair, is stepping down. We cannot thank her enough for 10 years of devoted service and dogged determination to serve the cause of people living with lupus. She has encouraged us to keep the momentum and we look to the future with hope and determination. At the close of the convention, Jeanette Andersen was elected as the new Chair of LUPUS EUROPE, and Alain Cornet was appointed to the newly created position of General Secretary.

We are happy to present the 2018 board who we are sure will continue to serve the best interests of LUPUS EUROPE’s member organisations. From left to right: Katharine Wheeler (Vice-Chair & Secretary), Kirsi Myllys (Treasurer), Anne Charlet (Vice-Chair),  Jeanette Andersen (Chair), Annemarie Sluijmers (Skin) and Sara Badreh (Research & Youth).

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These few lines are just a taster, from a very full convention. More news and a complete convention report will be on its way soon.

 

It’s World Lupus Day!

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May 10th is World Lupus Day

What is lupus?

Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin.

Up to 500,000 people in Europe have lupus. 90% of people with lupus are women and 80% of diagnoses are made between the ages of 15 and 45.

Symptoms can vary. The less severe ones include rashes, hair loss (alopecia), swollen glands, photosensitivity, joint pain and ulcers in the mouth or nose. In more severe cases, lupus may cause pleurisy, pericarditis, psychosis, meningitis, epilepsy or kidney failure. In young women, lupus can cause miscarriage or premature delivery.

If lupus affects vital organs and is left untreated it can be potentially fatal as it may cause organ damage and failure. Fortunately, in most cases, treatment puts lupus into remission before that can happen.

Great progress has been made developing treatment plans that considerably reduce lupus activity for most patients, however there is no cure yet! Typical treatment may include antimalarials (hydroxychloroquine), steroids (prednisolone), non-steroidal anti-inflammatories, and immuno-suppressants. Many patients do well on current medication but patients with more severe forms of lupus need more treatment options and solutions which reduce the current reliance on cortisone and its many long term side-effects. A complete treatment plan should also include physical exercise which is proven to have positive effects on fatigue, pain and mental health.

In March 2011, a new biological treatment became the first FDA-approved lupus drug treatment in over 50 years, however, is only used in limited cases due to its high cost. Several new treatments are now in the research and development process, but lupus research remains challenging because the disease itself is so multifaceted and complex in origin, with a mixture of genetic, environmental and other factors that has yet to be understood.

For most patients, living a full life with lupus is now possible, thanks to increasingly accepted standards of care, but this relies on early diagnosis, consistent treatment prescribed by a lupus specialist, and adherence to medication. Getting back to an active professional life may present a challenge for some but many people are able to return once their lupus is well controlled. Most women who want to start a family will also be able to if they plan their pregnancy carefully, with specialist supervision.

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What is LUPUS EUROPE?

LUPUS EUROPE is an umbrella organisation that federates national lupus groups across Europe. It represents 26 groups (between 15-6,000 members), in 24 countries (33,000 people in all). It was first formed in 2000 (formerly known as ELEF).

LUPUS EUROPE’s activities include raising awareness, sharing information between members and countries, empowering national groups, and helping members participate in and benefit from research. Over the years, LUPUS EUROPE has fought hard for patient-centred care and the inclusion of patient organisations as valued healthcare stakeholders.

 

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The Kick Lupus campaign – Why ‘Kick Lupus’?

The campaign ‘Kick Lupus!’ focuses on the need for the development of better treatments, increased awareness about the disease’s impact, and management options for patients, carers and health professionals.

Kick-starting a better life – adhere to treatment: Not taking medication or taking it incorrectly is the #1 reason why treatment doesn’t work. Treatment is critical to living well with lupus. Know your pills, and follow your doctor’s advice. Doing so will help you kick your lupus!

Kicking ideas around – patient/doctor communication is key: We will only win in lupus if we work together as a team. The Doctor/Patient relationship is crucial: agreeing on treatment plans, working together on new treatment options, and participating in research to better kick lupus into oblivion!

Kicking yourself into shape: physical activity reduces tiredness and pain: It has been scientifically proven that physical activity helps reduce fatigue and pain. This is also true for people with lupus. It can be hard to exercise at first but it soon starts to pay. Exercise regularly, gradually increasing difficulty and endurance. A key component in kicking lupus!

Kicking lupus awareness into midfield: volunteer in your local group: You are not alone. Many of us are trying to kick lupus, and we need to move together, cheering each other on when we feel the burden – helping each other when we can. All our member organisations need volunteers to increase awareness and take projects forwards, kicking lupus together!

Help us Kick lupus NOW! Take your first steps today. You can find the list of local member groups on the LUPUS EUROPE Website (www.lupus-europe.org).

 

 

 

Meet the Lupus World at the ICL in Vienna

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Hofburg by night – ICL and Lupus Summit venue 2015

Today is World Lupus Day, a great time to be thinking about bringing the Lupus World together. 

‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with the LUPUS EUROPE secretariat for further details secretariat@lupus-europe.org

LUPUS EUROPE’s convention will take place from 4th-6th September, following on directly from the ICL congress. We hope that this organisation will mean that many of our members also have the opportunity to visit the ICL. 

Happy World Lupus Day! 

11th International Congress on Systemic Lupus Erythematosus

LUPUS EUROPE needs YOU!

If you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a huge difference!
If you have some time and skills to spare, please get in touch with the Lupus Europe secretariat at secretariat@lupus-europe.org
Augusta & Francesca

Augusta & Francesca

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Before becoming a trustee, Katharine had already volunteered to attend key events.

Patient Advocates (starring Nuria)

We’re delighted to share a really great video interview of three patient advocates telling us more about why they get involved. The video was made during the Eyeforpharma event in Barcelona  and stars our very own Nuria! To view the video please click here.

World Lupus Day 2015

Dear Lupus Europe members,

The theme for this year’s World Lupus Day is “Tame your wolf – Tame your lupus”.

We were delighted to be able to ask Leslie Quagraine, a fellow lupus sufferer, if he could produce the artwork for our campaign. Leslie was born in London but is a long-time resident in Finland. He has been a freelance illustrator for 37 years. 

Here is what Leslie has to say about his involvement in this project:

“The two symbols associated with lupus, latin for wolf, are the wolf and the butterfly. Although the rash across many a lupus sufferer’s face is an unwanted symptom, its butterfly shape has become a symbol associated with the care of the disease.

The young woman in the poster is determined to control her lupus/wolf, with the support of a squadron of butterflies. The variety of butterflies indicate that symptoms and treatments differ from patient to patient.” 

With this campaign we hope to be able, not only to increase awareness, but also to promote better management of people’s lupus and a feeling of empowerment. The idea of taming the wolf is a strong message that it is possible to actively participate in our care and tame our disease.

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