The Swedish Heart and Lung Association signed in may 2022 to be a supporting patient organisation in ERN GUARD Heart.
I am the appointed representative of Sweden and shall work for the benefit of patients and families with rare heart diaseases and complex conditions. I live in Umeå, a city in the northern part of Sweden, and is member of the local board. I am 67 years old and a retired nurse teacher (RNT, PhD, senior lecturer).
We have started a collaboration with Center for Kardiovascular Genetics (CKG) at Norrlands University hospital and will arrange a dialogue seminar in spring 2023 as a starting point. We will invite patients, family members as well as professionals to discuss relevant collaborative activies.