Scandinavian Association for Glycogen Storage Disease

    Helping families with GSD to better treatment and connecting healthcare professionals

 

Society for the Study of Inborn Errors of Metabolism

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 GSD: 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.

Past activities


May 12-14, 2017

SAGSD Patient meeting

Havnsø, Denmark


May 14-15, 2016

SAGSD Conference, Ängelholm, Sweden


May 1-3, 2015

SAGSD Patient meeting

Munka Ljungby, Sweden


May 17-18, 2014

SAGSD Conference, Ängelholm, Sweden


May 2, 2013

Fundraising for SAGSD, Copenhagen, Denmark


April 27-28, 2013

SAGSD Patient Meeting, Ängelholm, Sweden


May 5-6, 2012

SAGSD Conference, Ängelholm, Sweden


August 28, 2011

Fundraising for SAGSD, Århus, Denmark


August 18, 2011

GSD Meeting on Type I, III, VI and IX for doctors and dietitians, Copenhagen, Denmark

 

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.

 

SAGSD sponsors

We thank you all for making our meetings possible:







 

Patient meeting May 12-14, 2017, Havnsø, Denmark

We had a great meeting arranged by the SAGSD secretary Signe and Henrik, Kamille’s parents.


38 parents and children from Sweden and Denmark attended. We had patients with GSD types I, IV and XI participating the meeting.

 

4th SAGSD conference April 28 to 29 2018

will be held in Ängelholm, Sweden

Visit the Priority Setting Partnership website for hepatic GSD!

http://www.igsdpsp.com

Support us and buy a T-shirt

The SSIEM has donated €2000 to enable to hold   conference!

www.ssiem.org