We did it. We have founded an international patients (survivors) non-profit association for a super rare diagnosis, and even more rare when it comes to survivors of the illness that is so lethal. ”Aorta Dissektion Föreningen Skandinavien”
Seventeen survivors, all in different cities in Scandinavia.
Four (4) survivors in Denmark from Tønder, Fredrikshavn, Stenløse and Aalborg.
One (1) survivor in Norway: Flisa.
Twelwe (12) survivors in Sweden from Mariefred, Sollentuna, Gävle, Göteborg, Eslöv, Örebro, Alingsås, Stenungsund, Partille, Staffanstorp, Hällingsjö and Sandared.
Together we have founded the first non-profit international patients association for survivors of Aortic Dissection in the World.
We have statutes that has been discussed and revised nine times before we all agreed. We have a formal board with a chairman, secretary and treasurer. We have an auditor, and two alternate board members. All in all five (5) survivors has taken on formal duties to be able to set up the association.
Most of us have never met in real life, we have found each other with help of internet, we have had meetings in closed forums on facebook, live meetings over Skype, and we have had an open democratic debate to agree upon the statutes to give guidance as for what the association is about, how it is run, and how it will survive most of us who are the founders. We finally agreed on a meeting that lasted most of the day friday the 19:th of September 2014. We have during the day voted for the board, and elected a chariman, a secretary, a treasurer, a auditor to revise the annual accounts, and two alternated board members. It is a Scandinavian organisation, who will use the Scandinavian languages in public communication, Danish, Nowegian and Swedish. Main aim is to get known to all the survivors in Scandinavia, so that survivors who never met another survivor can find others, and to provide support among ourselves within the group.
For an illness to be classified as a “rare diagnosis” less than 100 persons out of 1.000.000 get it per year. Aortic Dissection (AD) occurs for less than 30 persons out of 1.000.000 per year. A majority of them dies either before they reach hospital or during or after surgery. So AD classifies as a super rare illness when it comes to survivors. There are not many survivors living with Aortic Dissection and that is why there are no regular patients associations for this group of patients. There are no official statistics in Scandinavia when it comes to who many survivors there are in our countries.
We will now proceed with all the administration to formally set up the organisation, registering it with the approriate authorities, joining larger organisations like the ”Rare disease” association founded by the Swedish National Board of Health and Welfare. We will also get the word out to media, and to all the university hopitals performing surgery and who has ICU handeling AD patients in the Scandinavian countries.
1954 the first surgery on AD was done. 2014 the first official patient organisation was founded. Horray !