You are special for me!

For the first time on the sites, producing a small narrative about my work in the rare disease unit in the Pohjois Savo welfare area at Kuopio University Hospital. In Savonia, I’m studying a master’s degree in social and health digitalization expertise – and oh, so wonderful halfway to heaven and incompleteness in every area of ​​life.

“Believe – you are halfway there”

“Rare Care” doesn’t quite describe my work, because the rare disease unit is not a unit responsible for care, but it functions as a consultative expert unit, which the patient can enter after receiving a referral from another unit responsible for care.

In my job as a nurse coordinator, I get to respond to patients’ contacts, guide them along the treatment path based on an assessment, organize expert meetings with members of the national network, act as a nursing expert within my own hospital and work with stakeholders. That is, a bit like being a planer everywhere, with an innovative, enthusiastic and top-notch colleague, the senior physician. We have “free hands” to make the work look our own and to plan the work as best as possible for the promotion of rare diseases in a wide network in our own area, cooperation area, nationally, nationally and internationally.

I hope that through this channel I learn something new about writing a blog. Also I hope I can describe little bit the content of my work and people with rare diseases. Today, we need an attitude towards all special groups and minority groups that is accepting, understanding and promotes their issues. Influencing attitudes at all levels, both with small and larger actions. (I’ll) Enjoy the trip! 🙂

Thank you for reading!