New OIFE Member: SFOI Sweden
From February 2021 OIFE got a new ordinary member organization Sveriges Förening för Osteogenesis Imperfecta (SFOI). Get to know them better through this interview with Lars-Göran Wadén, co-chair of SFOI.
Who are you and what is your relationship with OI?
Therese Rudolfsson and I, Lars-Göran Wadén, currently share the chairmanship of the OI-association in Sweden. We both have our own experience of living with OI and are wheelchair users. 7-8 years ago we participated in a summer camp in the Swedish valleys in a town called Mora. There, the first seeds were planted and with a lot of support from our Nordic OI neighbors, an interim board was eventually created.
How many people with OI does Sweden have?
It’s hard to say exactly, but I heard someone say that it could be about 400 people.
Can you tell us about the situation for people with OI in Sweden?
Our opinion is that parents of children with OI generally have really good support. However, when people transition from child to adult, it gets worse. Better care for adults with OI is underway, but so far, the level of knowledge among care staff is generally low for adults. There is research on the diagnosis, but we would of course have wished that there were more resources, a greater interest and more research for a better future for us with OI.
Can you tell us about your organization?
Today we have a functioning board and about 40 members. We have just applied for and been granted membership in OIFE, which we are very grateful for. About every other month we hold member meetings with different themes, we are on Facebook and we soon have a website up and running. As a patient organization, we are involved in influencing authorities and we are working on publishing our own newsletter soon.
How many members do you have? How do you recruit more members?
At present we have about 40 members. The business plan clearly states that we will work with member recruitment. So far, we have been only semi good at it. We need to create some information material about OI-Sweden and put the material in hospitals and specialist clinics for OI.
What are the biggest challenges for your organization?
The corona pandemic has been a challenge, but we are now becoming increasingly comfortable using digital tools. We have not been so active in getting information about the association spread to recruit members, but we will get better at it.
What is your biggest success?
When the National Board of Health and Welfare called and wanted to include us in a reference group about coordination of care for OI, it felt important and we realized that we could still make a difference. And, when someone in Gothenburg wanted to arrange an OI week for adults and children together with us, we were happy. Sometimes individuals contact SFOI with questions and we can deliver answers or guide them to others, we understand that OI-Sweden has an important function.
What are your plans for the future?
It would have been exciting to find collaborations with other organizations, become many and strong, and work more with advocacy work. It would also have been interesting to initiate a project that highlights the people behind the OI diagnosis. A project to increase understanding among others about what it is like to live with OI.