Alain Cornet
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:
International contact :
Kari Ødegård
+47 913 291 81
Association address:
Steinhagen 55A
4100 Jorpeland
Norway
Tel.: +47 233 490 81
Email: lupus@revmatiker.org
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Next, it was Portugal’s turn for a “LUPUS EUROPE catch-up”. Katharine spoke to Rita Mendes and Inês Ribeiro.
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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