Scandinavian Association for Glycose Storage Disease (SAGSD)

Helping families with GSD to better treatment and connecting healthcare professionals

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SAGSD Conference
May 14-15 2022

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Svenska

Detta är en patientförening för familjer med glykogenos eller som det också kallas Glycogen Storage Disease (GSD). Det är ett nätverk för personer med lever typer av GSD i Sverige, Danmark och Norge. Genom nätverket kan vi utbyta information och lära oss av varandra. Medlemskap kostar bara 100 SEK/år. Kontakt oss for mer info.

Läs mer om Glycogen Storage Disease på nedanstående länk: Socialstyrelsen

Dansk

Dette er en patientforening for familier med glykogenose eller Glycogen Storage Disease (GSD). Vores hensigt er et netværk for personer med lever typer af GSD i Sverige, Danmark og Norge. Gennem netværket kan vi udveksle oplysninger og lære af hinanden. Medlemskab koster 100 DKK/år. Kontakt os for mere info.

Norsk

Dette er en pasientforening for familier med glykogenose eller Glycogen Storage Disease (GSD). Vores hensigt er et nettverk for personer med lever typer GSD i Sverige, Danmark og Norge. Gjennom nettverket kan vi utveksle informasjon og lære av hverandre. Medlemskap koster bare 100 NOK/år. Kontakt oss for mer info.

The different types of liver GSD respresented by the SAGSD:

The Scandinavian Association for Glycogen Storage Disease (SAGSD) provides support and help for individuals and families affected by hepatic (liver) types of Glycogen Storage Disease (GSD). We will help doctors, dietitians and patients establishing contact, providing information and holding conferences and meetings. The SAGSD has members from Sweden, Denmark, Norway and Finland, both children and adults are members. We represent all the liver types of GSD in our association. Glycogen is a stored form of glucose, which is used as a fuel for energy. Glycogen Storage Disease or glycogenosis occurs when there is an absence or deficiency of an enzyme needed to produce or break down glycogen in the body. GSD primarily affects the liver and/or muscles.

The 5th SAGSD conference in Ängelholm, Sweden

May 14-15 2022

The past weekend a very successful conference took place in Ängelholm, Sweden. At the historic hotel Klitterhus, 59 persons were present, 14 families with children or adults with one of the liver types of GSD and 7 Swedish metabolic and hepatologic doctors and 4 dietitians. Several workshops and interactions between the families and health care professionals were held. As a new initiative the conference was also broadcasted live via Zoom, for this biannual conference with another 62 people joined and one could listen to world renowned experts on GSD holding presentations. With the in total 121 people, in-person and virtual, this was the biggest conference ever held in Scandinavia on Glycogen Storage Disease. The feedback from the Scandinavian health care professionals, the invited speakers and industry has only been positive. As and extra surprise the supercar company Koenigsegg also accepted to stop by and show the children and adults one of their spectacular cars. We are very grateful for all the support from families, health care professionals and the sponsors, all are valued. Without your conferences likes these cannot be possible!

Look forward to the next conference in two year! We hope that researcher and industry continue to develop new treatment for GSD and we still hope for an actual cure some day!

/Marcus Landgren, president of the SAGSD