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Did You Miss EULAR 2020?
still available for viewing till August 31
Every year, thousands of rheumatologists, health care professionals, researchers and patients meet at the European League Against Rheumatism Congress, the biggest event for Rheumatic diseases in Europe.
This year, the event was replaced by an on-line event. While this was less good with regards to making connections, it had the great advantages that more people could join as it eliminated travel time and costs, and that most conferences are still available for viewing till August 31.
Grab the opportunity!
Here are 2 alternatives that are available for free:
[1] You can watch this 30 minutes video here
that contains Alain’s top 10 take-aways from EULAR
[2] You can register here
to see all available recording, posters, … till August 31.
Grab the opportunity
registration is FREE for patients!
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Volunteers
help us make LUPUS EUROPE more IMPACTFUL!
Are you interested in supporting Lupus Research or New medicine development or approval by bringing YOUR EXPERIENCE as a person living with lupus to the table? Or maybe you have skills in communication, running surveys, organizing events?
Why not join one of LUPUS EUROPE’s working groups to bring those skills to the community. Over the past years, we have massively grown our team of volunteers supporting LUPUS EUROPE in specific projects, but we need more to meet the increased demand for engaged patients willing to contribute to a better future with lupus.
We need patients with cutaneous lupus, lupus nephritis or systemic lupus, willing to share their thoughts with the European medicine agency, or to review documents prepared by scientists, academics or pharma companies to bring their work to patients in lay language, or to contribute thoughts to the European reference Networks…
We also need people that are willing to support LUPUS EUROPE’s activities: organizing a kick lupus contest, helping with the convention, patient panels, surveys, welcoming new members, creating specific groups, …
LUPUS EUROPE’s impact is growing, and with that, the level of requests we receive for more support. As we want to remain a volunteer driven organization, we need more volunteers that join us in the effort. Help us further impact today’s world so that tomorrow is better for people with lupus.
For further information or to apply as Lupus Europe volunteer, just complete this form here or send a message to secretariat@lupus-europe.org.
JOIN US!
see you soon in one of our projects
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Living With Lupus in 2020 Survey
a HUGE Thank You to the 5922 PARTICIPANTS!
Launched on World Lupus Day, may 10, and closed on may 31, LUPUS EUROPE’s on line survey on “living with lupus in 2020” has been an incredible success, beating all expectations by a huge margin.
Thanks to you, we have collected no less than 5,922 answers from 37 European countries. France has this time delivered the highest absolute number of answers with 874 participants, ahead of UK (800) and Italy (678), but when taking into account each country’s population, Finland has the highest participation rate with 40.1 answers per million inhabitants, followed by Bulgaria (34.8) and Croatia (30.3). We are delighted to see such good results in Bulgaria and Croatia, two countries with which we are working to become members of LUPUS EUROPE!
The analysis work has started, based on this incredibly valuable dataset. For this, we have defined two separate tracks. On the one hand, the LUPUS EUROPE team is working with support of Professor Laurent Arnaud to statistically analyze, describe and interpret the data collected and paint an updated picture of the impact of lupus today. On the other hand, we work with Davide Mazzoni, a lupus patient himself and long term supporter of Lupus Europe, researcher in Psychology in Milano, to understand and depicts the free text input received (in 18 languages) on “the most important thing that helps you manage your condition”.
Our goal is to have each of these workstreams result in a recognized peer-reviewed publication. For this reason, we will need to keep results confidential a little longer so as not to jeopardize our chances of having them truly visible for a large public.
From our preliminary review of the data, we already know that there will be many very interesting findings in both workflows. We also have already identified several topics that will benefit from additional research, like the role of partners, the direct and indirect economic impact, or what makes people being more positive – or not – on their lupus‘ future.
We also realize that much of this data could be very useful for our national members, to understand the specificities of their group. This is particularly worthwhile for the 16 countries where we have collected more than 100 answers. We are working on solutions to make the analysis results available on a national level, after we have completed the Pan-European work.
We hope to be able to soon share more news with you, but in the meantime, we thank all participants for their support. It is so great to know that almost 6,000 persons have participated to this research. This must be a record!
a HUGE Thank You
to the 5922 PARTICIPANTS!
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Lupus Europe Seniors +60
‘We are lucky, we get old like other people’
But it is not so easy to grow older dealing with SLE / Lupus for many years.
Why? Because SLE / Lupus itself is a demanding partner to live with both the disease and the medications we need to keep “the wolf” calm. Most of us get comorbidities like high blood pressure, diabetes, high cholesterol etc., which leads to even more medications.
In the Danish SLE – Lupus Network early passing away is very rare, so I am lucky to have members for more than 25 years. As some of us got closer to 60 new items to talk about at our monthly meetings turned up. For instance: our body cannot cope with the same amount of medications like before.
We decided to ask in the Lupus Europe Network, because the Danish network is quite small. We hoped to learn from other networks throughout Europe. After a couple of years, I launched the new network for L.E.S. +60 with help from Kirsi Myllys, Finland on Facebook. The network is for everybody around and above 60 of age living with SLE/Lupus.
It is divided into different topics to make it easier to contribute with your personal experiences and more topics can be raised if you wish. Eg. diet, sjögrens, vacation, osteoporosis….. and a personal presentation.
At the moment, members from the UK, Italy, the Netherlands, Finland and Denmark has joined the network. Join us, you are very welcome, Tove
if you are +60
join the FB group here
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New Pages
on LUPUS EUROPE Website
growing section on ME & LUPUS
For those of you that access our website regularly, you will have noticed that we have added a new section ‘Me & Lupus‘ here. Our objective is to have in that part of the website relevant information on what YOU can do concretely to help the community or to help you personally handle lupus.
The two first chapters contain:
• the EXERCISE program here, so that you can improve your health and reduce your fatigue with the appropriate exercises, regardless of your current fitness;
• a SURVEY center here, where we will place links to currently running surveys, so that you can easily participate in the research programs and donate your experience for the benefits of the community.
We are working on adding two other sections, that should hopefully be ready soon:
• one will be the INFORMATION center, where we will bring links to recent relevant publications with regards to lupus: new research items, survey results, projects run by some of our members, …;
• the other one will be about CLINICAL TRIALS, helping you to identify if some trials are taking place in “near” your home. It will allow you to find if those match your own situation, so that you can talk with your doctor if you feel like participating. We are hopefully finalizing the work on this item, but want to make sure that there will be no commercial bias in the data provided, so that you have full transparency on the information available.
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Lupus Europe Convention
BRATISLAVA 2020
an update on plans
With the continued constraints and uncertainties associated with the COVID-19 pandemic, we realize that many of you would like to know more about our upcoming plans. Our convention typically takes place in November and in previous years we would have been registering participants now. Although 2020 is proving to be a unique year so we have had to adjust accordingly. So here is the most current information:
[1] As per today, we are still working towards a face-to face convention 2020 for our members in Bratislava. It will start on Thursday afternoon – November 26th – and finish on Sunday afternoon – November 29th. This is still 3 months away, so we hope things might still improve!;
[2] One thing is sure: We will NOT run the convention if it exposes participants to increased risks resulting from COVID (or any other risk!), so we have also started working on a plan B;
[3] We have defined specific “checkpoints” to which we are seeking advice from leading European lupologists on the continuation or cancellation of our convention planning efforts. If necessary, this will go on till the very last days before the convention, and we will follow their advice if they recommend cancelling, even if this is last minute.
[4] With regards to the program, the theme of the convention will be around INCLUSION: how can we better include everyone, regardless of ethnic origin, gender, age, geographic region, socio economic or education level? In addition, how can we better include our whole self in the fight against lupus? We have already secured the participation of Professor Laurent Arnaud, who many of you might follow on twitter and in social media – if not, don’t miss his tweets @LupusReference here.
[5] If face-to-face, we will limit the attendance to the convention to ensure that we can maintain sufficient “social distance” amongst participants. Our convention is only for member representatives, as well as volunteers active in the PAN (Patient Advisory Network), COM (Lupus Europe Communication group) and YOUTH groups. Industry partners will be welcomed on Friday, also in limited numbers.
[6] For the council session, we are also working on alternate voting methods to enable the council session to take place via electronic means so that all our members have the possibility to vote at council, even if they feel unsafe traveling to the event.
[7] While we are not asking you to commit to attendance by registering immediately, we will open today a PRE-REGISTRATION list. If you think that you might attend the convention, please PRE-REGISTER now by sending a short email to secretariat@lupus-europe.org. Pre-registration is NOT a commitment to attend but will help us with the planning. If you Pre-register, you will then receive a one-week priority notification email to register before we open registration to other participants if the number of available places allows.
please relay this information
to your national networks
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HCQ Availability Survey
How is it now?
Most, if not all, of you will remember the days that have followed Doctor Raoult’s and “Doctor” trump’s tweets on how effective Hydroxychloroquine (HcQ) was to treat covid-19. In the days that followed, the demand jumped, and the supply disappeared. While Donald Trump was saying “what is the risk? There is none”, the real risk materialized: that people really needing HcQ would not be able to get it.
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LUPUS EUROPE’s survey showed that availability of HcQ when asked in the usual pharmacy reduced from 65% at the beginning of March to 51% end March and 44% early April and that 6.7% of all patients have experienced a delay of 2 weeks or more or are still without HcQ more than 2 weeks after ordering.
While plans have been established with the support of the European Medicine Agency, national health agencies and manufacturers, we would like to validate that we are now in a fully remediated situation. Therefore, we need your help to respond to the Hydroxychloroquine survey, based on the situation you have faced over the past 3 months, i.e. starting from June 2020, when you tried to purchase Hydroxychloroquine. Please do disseminate this link here so that we have a great participation, and meaningful results to report.
see also below
Boryana Boteva’s article on Hydroxychloroquine in Bulgaria
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To be in the Right Place
at the Right Time
The Positive Side of Covid-19 Pandemic
Boryana Boteva’s article on Hydroxychloroquine in Bulgaria
People with RMDs in Bulgaria face a lot of challenges every day, but since last year those with Systemic Lupus Erythematosus (SLE), Rheumatoid arthritis, Scleroderma, Sjögren’s syndrome do not have access to basic medication such as hydroxycholoroquine / chloroquine. Аccording to the available data, 4000 people with RMDs in Bulgaria need hydroxycholoroquine / chloroquine.
Till the summer of 2019 Chloroquine was available in Bulgaria. Due to technical and quality reasons the company producing the medicine stopped selling it in all European countries. Patients in Bulgaria used to buy hydroxycholoroquine from neighbor countries. Since the world was locked because of COVID-19 pandemic the borders were closed and it was no longer possible for people to travel and buy medications. It was harder also because hydroxychloroquine was used for treating patients with COVID-19.
As an organization which defends patients’ rights Bulgarian organization for people with rheumatic diseases campaigned hard and attracted media attention to the problem. Facing this unprecedented situation BOPRD has addressed Ministry of Health, The Prime Minister, The President, The Bulgarian drug agency, the Bulgarian rheumatology society.
We have organized a lot of interviews on TV and online media. We have great support from people with RMDs and their families and friends. BOPRD initiated a petition that was addressed to all institutions that are responsible of providing the best treatment to all people with chronic diseases. The petition is signed by almost 4000 supporters.
BOPRD started a social media campaign that will highlight the problem again and it is called ‘We have the right to receive treatment‘. We decided to send letters to different pharmaceutical companies, asking them to start a procedure of registering hydroxychloroquine. We were happy when we received an answer from a Bulgarian Pharmaceutical company, stating that on 15-t of April the required documents were sent to the Bulgarian drug agency.
We were aware that the procedure will last at least seven months, as it is written into the law. We initiated a conversation with the Director of the Bulgarian drug agency who promised to do his best to shorten the procedure and finally in June 2020 the company informed us that hydroxychloroquine is registered and patients can buy it from pharmacies.
Although the price of the medication is higher than in other European countries, we are happy that it is already available in Bulgaria. It is a great example of being in the right place at the right time and of getting the best form a bad situation.
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a Boryana Boteva’s article
on Hydroxychloroquine in Bulgaria
continue to work on HCQ availability
see the above survey on current status
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Contacts & Social Media • Follow Lupus Europe
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