|Dear LUPUS EUROPE Member or Friend,|
Please read the following below; your answers are important and urgently needed as the surveys will only be open for a few days. Our aim is to maximise the input of participants. Sharing this survey could be worth money to your organisation. Members effectively disseminating this information through their networks will earn discounts for the next convention.
LUPUS EUROPE is involved in driving forward multiple projects alongside Academics, Researchers and Doctors who are dedicated to helping people with lupus enjoy a better quality of life. We have received 2 requests for support to participate in an online survey with a very clear format. The objective is to collect information from the wider lupus community including patients, family and caregivers. This information is then analysed by a multi-functional team, in which LUPUS EUROPE is represented, to trigger action, influence projects and/or guide decisions.
If you have a systemic lupus (SLE), we would very much appreciate if you could complete BOTH surveys. If you can only do one, then please start with INTEGRATE.
The surveys have been translated into a few languages : 3 for INTEGRATE, 7 for the ERN. Unfortunately, we have not been able to get translations in all languages used in our community. We attempted to do so, but it proved impossible due to regulatory restrictions causing time and costs to become overly excessive. Please accept our apologies for this and use the language that you are most familiar with. We still hope to find solutions to these issues for future surveys.
The survey is part of the INTEGRATE project (www.integrate-sle.eu), a project funded by the European Commission involving the University of Pisa (Italy), the University of Dusseldorf (Germany) and the Sant’ Anna School of Advanced Studies (Italy).
The aim of the project is to map the needs and expectations of patients with SLE and the rheumatologists involved in their care and management in order to design strategies integrating both points of view, with the final goal to improve management and self-management of the disease.
As SLE patient you have been invited to participate to the survey, through the LUPUS EUROPE association or your clinician, to give voice to patients with SLE.
To complete the survey (in English, Italian or German), please follow this link: https://www.integrate-sle.eu
Thank you in advance for providing your feedback by 15th February 2019!
Your participation and your time will be really appreciated and it will surely contribute to the success of the initiative.
ERN RECONNET Survey :
RECONNET is the European Reference Network on rare and complex connective tissue diseases. It brings together Healthcare Providers and patients to improve the quality of care, the activity of the physicians, and the empowerment of patients across Europe. The survey collects simple feedback on different aspects related to ethical, legal and privacy issue, and on cross-border healthcare. It is available in Dutch, English, French, Italian, German, Portuguese and Spanish:
Dutch : https://goo.gl/forms/jnhl45rosttSLXUt1
Both surveys are TIME SENSITIVE and WILL ONLY BE AVAILABLE FOR A FEW DAYS. Please answer and distribute through all networks as soon as possible.
For LUPUS EUROPE member organisations; distributing these surveys via your networks will grant you 2 x 50 Euro discounts for the next convention. Please send a screenshot of your messages encouraging participation to the secretariat, and encourage people to answer as a high participation rate will be testimony of your effective support.
Remember that these surveys have limited availability and time is of the essence, so please act now.
LUPUS EUROPE’s Board
What are European Reference Networks?
Lupus Europe is a part of the European Reference Networks (ERNs), which connect patients, clinicians and researchers across Europe. They allow knowledge and expertise about rare diseases to be shared across Europe; providing patients with access to diagnosis and transformative care, without the burden of long-distance travel.
ERNs enable researchers to engage rare disease patients across Europe to support clinical trials ― offering families hope that an effective treatment, or even a cure, will be developed for their rare condition.
About the #ProtectERNs campaign
On 29 March 2019, the UK is set to leave the European Union (EU). At present the UK Government and the EU have not agreed on a withdrawal procedure that protects the UK’s ability to continue to be involved in ERNs.
Without continued involvement of the UK, the capacity of ERNs will be diminished and networks risk falling short of their ambition to raise standards and equity in rare disease care across the EU.
Genetic Alliance UK has developed a statement, in collaboration with a number of experts working in the rare disease field, on the importance of the UK’s involvement in ERNs. You can view the statement here.
The statement and the #ProtectERNs campaign is calling on the UK Government and the EU to secure the sustained involvement of the UK in ERNs.
How can you help?
For too long patients and families affected by rare conditions across Europe have struggled to access a correct diagnosis, specialist knowledge, and appropriate treatment.
ERNs offer a unique opportunity to transform care and treatment for patients, but only if we can maintain momentum and ensure they can utilise all the specialist knowledge and health data available to them.
The time to act is now. Please show your support by adding your name to the #ProtectERNs campaign.
Every year, EULAR grants a set amount to its knowledge transfer programme. The programme is designed to support patient organisations that wish to further develop their skillset through applying lessons learned by other organisations in the EULAR network.
This knowledge transfer is mainly done through visiting an organisation in another country. The programme is open to EULAR member organisations of PARE, and to organisations with co-opted delegates in the Standing Committee of PARE.
The total amount available for this programme is EUR 15,000.00.
Organisations are asked to develop and submit project ideas that will contribute to the development of professional capabilities within the organisation itself.
The organisation is required to describe their ideas in detail in the application form. In order to share their findings, EULAR expects recipient organisations of a grant to provide a report after the stay, focusing on the results achieved.
To apply, send your completed application documents to the EULAR Secretariat by 10 November 2018 (23:59 CET) to firstname.lastname@example.org
For any questions regarding your project, or for help with filling in the application forms, please contact Alzbeta Göhmann at the EULAR Secretariat.
Link to the EULAR Knowledge Transfer website: https://www.eular.org/pare_knowledge_transfer_progamme.cfm?cache=no
EULAR offers help to find a suitable partner organisation based on a short description of need, consultation on ideas and a webinar on how to apply for the Knowledge transfer programme on Monday, 15 October 2018 from 19:00 to 20:00 CET. You have to register for this webinar by 4 October 2018.
LUPUS EUROPE is delighted to invite you to participate to its Kick lupus 2018 “Word Cloud” contest (*)
There are so many ways to Kick Lupus a little (or a lot) further away!
This year, the “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better quality of life”. This connects very well to our next convention theme which will be “restoring hope”.
We invite all people living with lupus in Europe, their family and friends to participate:
For YOU, what is “Kick lupus?”
Build a word cloud that expresses what “Kick Lupus” means to you, and how you can “Kick Lupus” every day…
and send it to email@example.com September 1, 2018.
The best word clouds will be displayed on our website, and the winner will be invited to present its word cloud to the LUPUS EUROPE Convention end November 2018.
(*) Some important details:
– A word cloud is a way to assemble key words of relevance to the topic, using different sizes and colors to draw attention to the respective importance of each of them. Words assembled can then form a cloud shape… or any other attractive shape. You can find (free) word-cloud apps on internet, or draw them by hand and scan them.
– Submissions will be evaluated by a Jury appointed by LUPUS EUROPE Board, giving an important consideration to the content of the cloud, rather than merely the artistic appearance.
– Submissions will be received from today until 1st September 2018
– By sending your word cloud, participants agree to its use and publication by LUPUS EUROPE without payment of copyright.
– Word clouds can be made in any European language. However, we ask to please provide us with a translation of the words used (which can just be a list on a separate sheet) to help the Jury assess fairly the word content.
We are delighted to inform you about the launch of the 2019 Edgar Stene Prize Competition. At the Opening Plenary Session of the forthcoming European Congress of Rheumatology in Madrid, Spain, on 12 June 2019, the Edgar Stene Prize will be awarded to the winning essay on the topic:
“My ideal employer – Work without barriers for people with RMDs”
EULAR invites people with RMDs to write about their personal experiences. We all want to live life to the fullest and independently and work is an essential part of our life. Be it paid work, voluntary work or looking after the family and a household, this can be a challenge for people with RMDs. What measures, aids, attitudes by employers – this can also be the family, society or the organisation or institution you would like to volunteer for – can support people with RMDs to be able to work in their dream job, or look after a family – we want to hear from you this year what should your ideal employer offer to you to make your work more accessible and manageable – or if there is already something which is reality we want to hear your best practice examples!
As in the past, we encourage our national EULAR member organisations of PARE to organise national competitions for people with a rheumatic or musculoskeletal disease (minimum 18 years of age). Competitors should be invited to submit an essay not exceeding 2 pages (A4) in their own language to their national EULAR member organisation of PARE. The deadline for the national completion will be set individually by each national organisation. Anyone who would like to submit an essay should get in touch with their respective national EULAR member organisation for further information.
Each national jury should select and submit the best entry from their country (only one entry) by email to the EULAR Secretariat by 20 January 2019. A more detailed outline of the rules can be obtained by contacting the EULAR secretariat. Please note that these have to be fully adhered to, as applications which are not complete will not be accepted by the EULAR Secretariat.
A EULAR Jury will select the 2019 Stene Prize winner to be announced by 15 March 2019. The jury’s decision is incontestable. Information about the 2019 EULAR Jury will be posted in the coming months on www.eular.org
The Stene Prize winner will be invited to attend the Opening Plenary Session of the EULAR Congress in Madrid and is awarded a prize of € 1 000. EULAR provides the winner with travel to Madrid and hotel accommodation for up to 4 nights as well as with
an invitation to the EULAR Congress Gala Dinner. The second ranking essay will be awarded with € 700 and the third ranking essay with € 300.
Thank you so much in advance for supporting this exciting and important competition in your country. If we can help with any questions please do not hesitate to contact the EULAR secretariat. The 2019 Edgar Stene Prize Jury looks forward to receiving many
entries from all over Europe!
With kindest regards,
Nele Caeyers, Chair, EULAR Standing Committee of PARE
Dieter Wiek, Vice President, EULAR, representing PARE
Polina Pchelnikova, PARE Working Group Leader Edgar Stene Prize
Raquel Liaño from Spain who took part in our Patient Panel on Youth in May 2018 has written some good tips and tricks for a person newly diagnosed with SLE. We hope you find it useful.
Consejos para un recién diagnosticado
Cuando a mi me dijeron que tenía Lupus yo no tenía ni idea de lo que era y la explicación que me dieron fue técnica y no me saco de mucho. En mi familia y mi entorno nadie lo conocía, algunos habían oído hablar de ello pero nada más, mi apariencia era la de siempre así que nadie le daba mucha importancia. Al principio me daba un poco de miedo decirlo porque no solían saber lo que era y yo no sabía explicarlo, los tres primeros meses para mi son los peores, el primer mes tuve una fuerte reacción al sol, o sea que descubrí que era fotosensible, aun arrastro “secuelas” de ese brote, antes de esa reacción solo se me inflamaban los dedos y desde entonces se me inflaman y me duelen todas las articulaciones.
A continuación os daré algunos consejos que a mi me hubiesen gustado saber y otros que me parecen interesantes.
- Es muy importante buscar un grupo de apoyo, en España en todas (o casi todas) las comunidades autónomas hay asociaciones de Lupus.
- Siempre hay que protegerse del sol aunque nunca hayas tenido ninguna reacción, debes echarte protección solar y ser muy cuidadoso con él. Algunas personas también les afectan los fluorescentes.
- Debes tener paciencia, tienes que ser consciente de que tu cuerpo algunos días no va aguantar el ritmo que llevabas antes, es muy importante descansar y saber decir que no cuando estés cansado, y no te apetezca hacer algo, tus amigos/familiares tienen que entender que tienes una enfermedad que absorbe tu energía.
- Ignora todos los comentarios fuera de lugar, te dirán “tienes que tomar mas el sol que estas muy blanco”, “te ves muy bien”, “no te ves enfermo”, también te dirán cosas como “no te preocupes que no se quien lo tiene y esta muy bien”.Aparte de ignórales también debes acostumbrarte ya que es inevitable este tipo de comentarios.
- Ten en cuenta que no hay dos lupus iguales es decir aunque tengamos la misma enfermedad no tenemos los mismos síntomas, tendremos algunos en común pero es probable que el transcurso de la enfermedad sea diferente. A cada persona le afecta de distinto modo.
Y por último aunque sea algo que se dé por hecho quiero recalcar que jamás te fíes de las curas milagrosas, en internet hay supuestos “médicos” con curas naturales, he conocido el caso de dos mujeres que murieron por abandonar sus tratamientos y comenzar con esas curas milagrosas, ambas acabaron con afecciones muy graves en sus riñones y cuando se les detecto fue demasiado tarde, por lo tanto nunca dejes tu tratamiento y sigue siempre las indicaciones de tu médico. No te dejes engañar en la actualidad el lupus no tiene cura pero si tratamientos que tratan de evitar la actividad de la enfermedad.
Considero que todo paciente debe saber o al menos tener en cuenta estas cosas, supongo que con el tiempo vaya añadiendo alguna mas.
You can follow Raquel here: https://www.facebook.com/El-lupus-y-Raquel-467282126977296/
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 (firstname.lastname@example.org) also has links to the survey in Portuguese, Dutch, Romanian, Italian, German, Slovenian and should soon receive French.
We are asking you to please relay the link through your social media channels and encourage your members to participate.
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.
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.
The non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included.
LUPUS EUROPE will have a virtual stand in the congress.
For more information, please see the press release: virtual congress CLAIR
The congress is held in French. To connect please click here.
To know more ?
- CLAIR, Asbl : http://www.clair.be; email@example.com
- Arthrites, Asbl : http://www.arthrites.be; 0800/90 356 ; firstname.lastname@example.org
- Association des Patients Sclérodermiques de Belgique, Asbl : http://www.sclerodermie.be; 069/777 019; email@example.com
- Association Lupus Erythémateux, Asbl :lupus.be; 0487/266 664 ; firstname.lastname@example.org
- PPP : patient-partners.be; email@example.com
If you would like to know more about the association ? Please visit CLAIR.be.
LUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and to build on some of our skills.
The conference was opened by Ms. Marianne Thijsen, the EU commissionaire for employment and Social affairs. She highlighted the commission’s progress on defining “European pillars of social rights”, 20 statements that should guide future EU Social policy. Three of those statements are particularly relevant as anchors to our work : (i) Everyone has the right to timely access to affordable, preventive and curative health care of quality; (ii) Access to safe work environment, fit for everyone; (iii) Right to inclusion for people with disabilities (including income support that ensures living in dignity, services that enable to participate in the labour market and in society, and a work environment adapted to their needs).
Another key statement that she made is that while some would like healthcare to be left entirely up to each country, she disagrees: “Arthritis does not know borders. Pain does not ask for your passport. There is a need to tackle health together: We can learn from each other, there should be no 2nd class citizens in Europe”. This is both the recognition of a threat, and a very nice statement on the need for EU health policy.
The conference then mostly evolved around the EULAR campaign “Don’t Delay, Connect Today”. If you are not yet familiar with this European wide campaign, see more on this link and offer your full support to this important initiative. Early diagnosis is a key priority, in Lupus and other RMD’s and can save a lot of personal hardship thanks to early treatment. The delegates very largely voted for a continuation of this campaign for at least another 2 years, so we can reach a maximum number of people.
Finally, a fun souvenir starring our chair, Jeanette Andersen who is reminding us of the importance of exercise.
LUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together. To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups.
There is no need to be a Lupus Expert, all that is required is the desire to contribute, and a fair (not perfect!) command of English, as well as a good internet connection 😊
Participating in a work group is great fun, and serves a real need. It will typically mean about 6 “skype calls” per year, and some work at your pace in between. We are seeking a 2-year commitment to allow for some continuity. If your workgroup requires one-shot travel within Europe, it will be fully funded. Active participation in workgroups might open up the opportunity for more travel, meetings and discoveries…
So why don’t YOU apply?
We are seeking:
3 to 4 Members for the Communication Work Group to improve overall communication – making it smoother and more regular – increasing our social media presence and LUPUS EUROPE’s visibility. The deliverables include creation and ideas but also ongoing support, which can be shared but requires consistent and planned messages showing LUPUS EUROPE’s work. Platforms include FB, twitter, the blog, youtube… There is also an opportunity to beef up our media presence for events such as World Lupus Day and at busier times such as around the convention. You like communication and have design or communication skills? Apply to join the COMMUNICATIONS Group.
3 to 4 members for the “Kick Lupus” Work Group to bring the Kick Lupus concept alive throughout the year by developing and rolling out initiatives that make people move, fight, kick, share and take the lead to push lupus further away. You want to help people with lupus feel better and more energised, and have creative ideas and the energy to implement them? Apply to join the KICK LUPUS Group.
3 to 4 members for the “Message tracks” Work Group to develop clear communication objectives and messages that will be offered for re-use by our members. What is our message to doctors? To newly diagnosed patients? To the general public? To politicians? Working together and using the methodology presented at the end of the Milan convention, we will seek to develop message tracks, and toolkits to make deployment easier. You have ideas on what our communication priorities should be and knowledge about lupus to bring arguments to support them? You would like to put thoughts in a structured and impactful format? Apply to join the “MESSAGE TRACKS” group.
5 to 7 members for the Patient Expert Group: This call is for people living with lupus that have already significant experience and understanding of the disease mechanism, who have been (or are ready to invest in being) trained as EULAR PRP, EUPATI, Eurordis or other similar training for patients supporting research. If you are interested in contributing through closer connections with the Research community, bringing the patients voice to the design, interpretation and on-going operation of research by industry academics, apply to join the PATIENT EXPERT GROUP.
Up to 10 YOUNG people with lupus for a one-shot YOUTH PANEL, to be held in May 2018. If you are aged between 18 to 28, this is a great opportunity to meet other people that live with lupus around Europe, while raising your voice so that we better understand what it really means to live with lupus as a young person today. The 2 days will be built around interactive sessions, designed to share views, concerns, aspirations, requests… It will be led by people who have lupus themselves. Interested? Apply for the YOUTH PANEL!
1 person with skills in video editing that could support our desire to be more active in this space, turning raw footage of short testimonies into attractive videos for web usage.
APPLY NOW by sending a message to firstname.lastname@example.org specifying which work group(s) you would like to join (giving a first and second choice), your name, address and phone number, a brief background on you and a few words explaining why you are interested. Applications will close by FEBRUARY 28 latest (earlier if great candidates are identified for all open positions).
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.
An ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018.
These surveys provide vital information to the doctors and researchers setting guidelines for our care.
This survey can be filled in by patients or their families or caregivers. It applies to people with lupus but also those with rare or complex connective tissue disorders.
For more information about the ERN and the survey, please click here.
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.