Scandinavian Association for Glycogen Storage Disease
Helping families with GSD to better treatment and connecting healthcare professionals
Welcome to the Scandinavian Association for GSD
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 alla 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 alle 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 alle 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 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 Scandinavian doctors and dietitians, Copenhagen, Denmark
Click on the links bellow to read more about the different types of GSD:
Upcoming conference May 14-15, 2016 at Klitterhus hotel in Ängelholm, Sweden
Invited are patients, dietitians and doctors, national and international, with interest in the hepatic forms of Glycogen Storage Disease.
We thank in advance our two main sponsors for making the conference possible May 14-15, 2016:
Vitaflo Ltd, UK
and
Navamedic AB, Sweden
The Scandinavian Association for Glycogen Storage Disease provides support and help for individuals and families affected by 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. So far we have 20 patients with several different GSD types in our association: Von Gierke’s disease (GSD I), Pompe’s disease (GSD II), Cori’s disease (GSD IIIa) and GSD IX. Find out more about our association by exploring the menus above.
Glycogen is a stored form of glucose, which is used as a fuel for energy. Glycogen Storage Disease (GSD) 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.
100 km fundraising race in Denmark May 7, 2016
Rasmus Salomon, a friend of one of the families from Denmark with GSDIa has a mission. He wants to run 100 km for a good cause and he is not alone. So far he has attracted 10 elite runners to join his crazy race of running 50 laps in a 2 km track in his backyard in the small town of Ringsted. The mayor of Ringsted, Henrik Hvidsten will be present and doing an opening speach as well as run the first lap with the ultra marathon runners.
Rasmus Salomon has so far raised 34000 DKK from the sponsors and donations from family and friends, he has been on TV, in the new papers and we expect the same on the day of the race. It is quite an achievement. You can read more on his Facebook page: ”100 km sponsorløb for SAGSD”.
Here is a clip from Danish local television:
Click here: TV-clip regarding the fundraising project
All money raised at the 100 km race will go directly
to reduce the cost for patients and families at the
3rd SAGSD Conference, May 14-15 in Ängelholm,
Sweden. We have so far 93 people attending, both
Patients, families, doctors and dietitians from
Scandinavia, Germany, USA, Holland, Russia,
Spain and Great Brittan. We are very proud that
so many wish to join and support our great
Community. If it had not been for people like
Rasmus Salomon, the meeting would not be possible! Thank you Rasmus!
We also admire and thank our sponsors for their moral and economic support!
