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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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2 weeks ago

🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗

📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.

🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.

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🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.

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2 weeks ago

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
... See MoreSee Less

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the Living with Lupus in 2024 survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Dont miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrGImage attachmentImage attachment+1Image attachment
2 weeks ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻 Izpolnite anketo.

🔊 Delite z vašo skupnostjo.

🙏 Help us achieve more answers to ensure the Slovak population is represented in the results

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#lupusawarenessmonth
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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