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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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15 hours ago
LUPUS EUROPE

Did you miss our joint webinar with ERN RECONNET?

Among other things, Prof. Laurent Arnaud talked about the new EULAR recommendations for the management of #lupus and the main changes that have been introduced.

Watch it and tell us what you think about them!

Did you know that our Chair, Jeanette Andersen was part of the task force?
😃

EULAR 2023 Debrief – for people living with lupus LIVE LINK
... See MoreSee Less

Did you miss our joint webinar with ERN RECONNET?

Among other things, Prof. Laurent Arnaud talked about the new EULAR  recommendations for the management of #lupus and the main changes that have been introduced.

Watch it and tell us what you think about them!  

Did you know that our Chair, Jeanette Andersen was part of the task force? 
😃

https://www.facebook.com/LupusEurope/videos/1464013921069862
16 hours ago
LUPUS EUROPE

Today is #WORLDAPSDAY, an autoimmune disease that affects 20-30% of people with #lupus.

#APS can cause:

- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.

#pregnancy #planning #SLE #awareness #APSAwareness
... See MoreSee Less

Today is #WorldAPSDay, an autoimmune disease that affects 20-30% of people with #lupus.

#APS can cause:

- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.

#pregnancy #planning #SLE #awareness #apsawareness
2 days ago
LUPUS EUROPE

Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!

We also...

🙌 Had 2️⃣ oral presentations.
🙌 3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.

Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan!

youtu.be/lLNJmCJ7iqk
... See MoreSee Less

Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!

We also...

🙌 Had 2️⃣ oral presentations.
🙌  3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.

Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan! 

https://youtu.be/lLNJmCJ7iqk
3 days ago
LUPUS EUROPE

... See MoreSee Less

Comment on Facebook

Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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