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At the beginning of this year, LUPUS EUROPE launched a new initiative, called “LUPUS EUROPE catch-up”. The aim is to better keep in touch with our member groups throughout the year.

The first member group we spoke to was Norway. Katharine Wheeler spoke to Kari Ødegård about the challenges and difficulties they face and about what they hope the future will bring.

Norway is a geographically difficult country, with lupus a small disease group. This makes it very difficult for members to stay in touch well and to meet up.

Some of the challenges they face include the lack of volunteers – a theme common to most member groups – and improving communication.

They are very enthusiastic about LUPUS EUROPE’s youth initiative and they hope that one day they can set up a youth group in Norway. They have also spread the word about the Kick Lupus campaign through instagram and are working on setting up a new, active Facebook page to better invigorate their group and its members.

You can get in touch with Kari at Lupus Norway with the following contact details:

Lupusgrupper i NRF

International contact :

Kari Ødegård

+47 913 291 81

Association address:

Steinhagen 55A
4100 Jorpeland
Norway

Tel.: +47 233 490 81
Email: lupus@revmatiker.org

___________________________________________________________

Next, it was Portugal’s turn for a “LUPUS EUROPE catch-up”. Katharine spoke to Rita  Mendes and Inês Ribeiro.

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This week the Portuguese Lupus group will be attending EULAR PARE – along with Sara Badreh from the board – so we chatted about what to expect and exchanged contact details for those attending.

Similar to the Norwegian group, the Portuguese group’s difficulties lie with funding and volunteers, especially volunteers with specific skills.

On the call Rita and Ines shared their hopes and thoughts, including some great ideas to move forwards together in the future. We will be looking into some of these in the very near future!

They are looking forward to being able to share their experiences and projects with other groups, both via the blog and the convention later in the year. We will be hearing more about one of those projects very soon – watch this space!

They are also very excited to have their very own lupus athlete and runner, Marisa, who is hoping to go to the European Masters Athletics to be held in Aarhus, Denmark in July. We will be sharing more of her story later on.

You can get in touch with the Portugese lupus group with the following details:

Associação de Doentes com Lupus
Maria Altiva Paula

Tel.: +35 121 330 36 40
Email: altivap@gmail.com

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1 week ago
LUPUS EUROPE

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients.

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study.

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients' experience & state of mind as well as to objectify emerging signals of new shortages in Poland.

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern.

How did hydroxychloroquine affect you?
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

lupus.bmj.com/content/10/1/e000895
... See MoreSee Less

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients. 

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study. 

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients experience & state of mind as well as to objectify emerging signals of new shortages in Poland. 

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern. 

How did hydroxychloroquine affect you? 
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

https://lupus.bmj.com/content/10/1/e000895Image attachmentImage attachment+3Image attachment
1 week ago
LUPUS EUROPE

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

www.eular.org/pare-stene-prize📣 Meet the 2023 #EULAR Edgar Stene Prize Jury!

🏆 The call for essay submissions have now closed and winners will be announced on 15 March!

Learn more about the #EULARStenePrize here 👉 pulse.ly/wforpnid8f

Register to #EULAR2023 👉 pulse.ly/r1xt9zca9p
... See MoreSee Less

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!  

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

https://www.eular.org/pare-stene-prize
1 week ago
LUPUS EUROPE

Sara, our Patient Advisory Network (PAN) coordinator, invites you to take part in our #kicklupus competition.

Remember that you can participate by sending your testimonial in your own language to zoe@lupus-europe.org.

Let's tell the world how volunteering for a #lupus organisation has helped change our life!

This competition is open only to people living in Europe with a diagnosis of lupus who are volunteers in a European Lupus organisation.
... See MoreSee Less

1 week ago
LUPUS EUROPE

Oh wow 🤩!

Due to unforeseen circumstances, we have 2 spots left for our Senior Panel!

If you live in Europe and have been diagnosed with #lupus before 2000, don't think twice and come to Barcelona with us!

The deadline for applications is this Friday!

Watch the video to make sure you fulfil the requirements and get to know more about this exciting opportunity!
... See MoreSee Less

LUPUS EUROPE Uniting people with Lupus throughout Europe
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