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Dear Members and Friends,
Spring is here, hope is in the air! In February we got the exciting news that Anifrolumab, also known by the brand name Saphnelo, has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of moderate to severe SLE. Every new medication approved expands the treatment options available for people with lupus! If you are interested in helping with the approval of this new treatment in your own country – please let us or your national lupus organisation know!
World Lupus Day is coming up soon and as usual Lupus Europe is following the campaign of World Lupus Federation on May 10th. This year the campaign will be based on the results of their survey on lupus with organ involvement and a continuation of their “Make lupus visible” campaign here. Amy will tell you more about the World Lupus Federation. What are you doing for WLD? Write us and tell about it!
In January we relaunched the Hydroxychloroquine availability survey. We had great results from it and would like to thank all of you for participating! Every time you take part in one of our surveys you are contributing to research and helping lupus patients everywhere!
On February 25 Lupus Europe had a roundtable with our industry partners. Each year we gather our industry partners around the same table (in this case virtually) to discuss common issues and opportunities to collaborate. We all have the common goal of working to improve the lives of people with lupus and there are so many ways we can support each other. This year the priority of our meeting was the planning of Lupus Europe´s next 5-year strategic plan (2023-2028) and we received really valuable input from our industry partners on what they think our priorities should be, if we want to make the most out of our efforts. As always, we had very good discussions about the future plans for Lupus Europe and how we can work together to achieve them. Aldevina will tell you more.
Each year on February 28 we celebrate Rare Disease Day. The Campaign for this day was developed by EURORDIS, who is one of our biggest partners. Alain will explain more about who they are and why we collaborate with them.
The current situation has meant that we will have to move the onsite part of our Annual Lupus Europe Convention in June to Leuven in Belgium instead of Bratislava in Slovakia. It will be a hybrid event and Zoe will give you more details and tell you how to register.
Let´s hope that spring will mean not only moving towards more light and warmer weather but also warmth in the human hearts and hope for peace.
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On behalf of the Board of Directors,
Jeanette Andersen
Chair of Lupus Europe
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what do the acronyms mean
EFPIA | European Federation of Pharmaceutical Industries and Associations | website
EMA | European Medicines Agency | website
ERN | European Reference Network | website
EULAR | European Alliance of Associations for Rheumatology | website
EURORDIS | Rare Diseases Europe | website
FDA | Food and Drug Administration, United States of America | website
GlobalSkin | International Alliance of Dermatology Patient Organizations | website
HcQ | Hydroxychloroquine
HTA | Health Technology Assessment
PAN | Patient Advisory Network
RMDs | Rheumatic and Musculoskeletal Diseases
SLE | Systemic Lupus Erythematosus
WLD | World Lupus Day | website
WLF | World Lupus Federation | website
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LE CONVENTION 2022
is coming up in JUNE
In February we announced the 33rd Annual Lupus Europe Convention 2022 was due to be held in Bratislava, Slovakia in June 2022.
Based on feedback from our members we have made the decision to re-locate our Convention this year to Lupus Europe Headquarters, Belgium. The Convention will be from the 18th to the 20thof June in Leuven.
We have created an exciting Convention programme for this year! The theme of our Convention will be Access. With the recent approval of Anifrolumab by the European Medicines Agency (EMA), it is important for us all to be well versed in Health Technology Assessment (HTA) processes. This will help maximise patient participation when the approval process for Anifrolumab begins for individual countries around Europe and that way we can work together towards assuring access to treatment for all.
Our Convention is aimed at our members and active volunteers. As in previous years our Convention will have a virtual component as well, allowing friends who are not able to travel to Leuven to access the Convention. This will also allow us to welcome a broader audience once again for some parts of our Convention.
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All applications will be reviewed by the Board of Directors and the relevant national member group and applicants will be informed of the result accordingly.
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EULAR 22
European Congress of Rheumatology
1-4 June
On June 1-4 the Annual EULAR Congress takes place in Copenhagen, Denmark.This year the Congress will be a hybrid and you can take part both online and onsite. Here you can learn about the latest scientific research within rheumatic and musculoskeletal diseases (RMDs) which also covers lupus. Registrations are open just click bellow!
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as a PATIENT or CARER/FAMILY member
tickets until May 1st | online 35€ | onsite 36€
(after 39€)
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AMY Somers’ journey
get to know an LE Board Member
Watch Amy Somers talk about her experience as a volunteer with Lupus Europe and how volunteering for Lupus Europe brought her closer to her own National Group, Lupus UK.
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ANNE Charlet’s journey
get to know an LE Board Member
Watch Anne Charlet talk about her journey to becoming a Board Member of Lupus Europe and the powerful impact it has had on her life.
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UKRAINE
SUPPORT & RESOURSES
Just as we were beginning to see an end to Covid restrictions everything changed and now we have a new worry with the situation in Ukraine.
Lupus Europe has created a Ukraine resource centre with contact details for lupus groups around the Ukraine, so refugees with lupus know where to seek help here
We have also joined forces with EURORDIS, who is facilitating and coordinating efforts to help support Ukrainian patients with rare diseases both in the Ukraine and refugees here
All 24 ERNs have united to set up a support platform to support rare disease patients affected by the Ukrainian crisis. Go here for more information.
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NEW TREATMENT available for lupus
Finally! 10 years after Belimumab, joins the very restricted club of drugs approved by EMA.
The approval is as an add-on therapy for the treatment of adult patients with moderate to severe, active autoantibody-positive systemic lupus erythematosus (SLE), despite receiving standard therapy.
This is a very significant development, particularly for those whose lupus has been resisting to current standards of care.
The next step is now to have it truly available for people living with lupus all over Europe, a country-by-country process with national reimbursing authorities.
In many countries patients and patient organisations, jointly with Rheumatologists, will have a clear role to play to highlight to their local assessment bodies why this product (and hopefully others that are currently under review) should become part of the locally available treatment plans. This will be a subject in our upcoming Lupus Europe convention.
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World Lupus Federation
Partnership
At Lupus Europe we are partnered with the World Lupus Federation. The WLF collaborates with approximately 250 lupus groups in 75 counties on six continents.
Most recently we have worked together to produce a 10-minute survey as a way for us to understand the impact of lupus on the body’s organs and raise awareness worldwide. This survey is intended for people diagnosed with lupus or those who are caregivers of those diagnosed with Lupus. All responses to this survey are anonymous. The survey ran for 3 weeks concluding on the 22nd of March. We look forward to the results and any insights it may bring in our journey to a world without lupus.
WLF | World Lupus Federation | website
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EURORDIS
Discover a LUPUS EUROPE partner
February 28 was Rare Disease Day. In most European countries, lupus is considered as a rare disease, acceptably one of the “most frequent” ones. As part of its strategy to partner with the most relevant groups, Lupus Europe has selected EURORDIS, the European Rare Disease platform as a key strategic partner. Lupus Europe is a member of Eurordis’ CEF (Council of European Federations), and currently has a delegate sitting on Eurordis’ Board of Directors.
For individuals and national lupus groups, Eurordis represents an incredible source of information and training. Free modules are available on a wide variety of topics through its open academy, such as how to plan & create for social media success, or how drugs move from research to therapies, how to use registries, or the bases of international advocacy work…
Joining Eurordis is also joining 988 patient organisations from all over Europe to influence European and International policies with a stronger voice. Eurordis is engaged in multiple Research programs, the European Reference Network, The European joint program on rare diseases, and actively promotes the needs of people living with a rare disease at European and International level. This has led for example to the development of a Rare 2030 plan, a program to step change the quality of care and quality of life of people living with a rare disease by the end of the decade.
If your member group has not yet done so, join Eurordis by becoming a member and join your national rare disease umbrella group. This will give you access to their materials, but also reinforce those organisations when they address topics of importance to all of us.
EURORDIS | Rare Diseases Europe | website
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PAN Roundtable
attended by our Industry Partners
On February 25th we organised a Roundtable, attended by our Industry Partners and members of our Patient Advisory Network (PAN).
The aim of the meeting was to gather input as part of our preparation of the Lupus Europe Strategic Plan 2023-2028. We covered a vast array of topics: Health Technology Assessment (HTA) and Access including approval of new medications and people around Europe accessing new treatments, data, volunteers and our commitment to remaining a volunteer led organisation, failed clinical trials in lupus and the importance of patients being able to access psychological support when needed.
Lupus Europe projects are increasing and with patients able to get involved in research and clinical trials, the role of the PAN is key. The Roundtable was a wonderful chance for a very productive dialogue!
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HcQ availability and anxiety
3rd wave of our Survey
A very big THANK YOU to the more than 2500 participants to the 3rd wave of our survey on Hydroxychloroquine (HcQ) availability and its effect on anxiety of people living with lupus.
Thanks to your support, we are able to put in evidence the remaining impact of the HcQ crisis of April 2020. In those countries that experienced significant shortfalls back in 2020, we still see a substantial impact in people anxiety with regards to access to their medication (the exact data is currently under embargo to enable scientific submission).
It also highlighted the particular case of Poland, where local issues have created a reduced availability back in December 2021, and Bulgaria, where improvement, though clearly visible, is still insufficient.
We are now working with experts on recommendations to avoid such a situation occurs again in the future, for any of the critical medication affecting us. More to come soon…
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THIS IS Living campaign
“This is Living” is aimed at motivating patients with chronic conditions, like lupus, to be actively involved in their wellbeing as the world emerges from the COVID19 pandemic and it highlights the importance of going back to life after COVID19. Representatives from many patient organisations, including Lupus Europe, have worked with Boehringer Ingelheim International GmbH on this campaign. To find out more, visit the campaign’s website. |
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