Scandinavian Association for Glycogen Storage Disease

The Scandinavian Association for Glycogen Storage Disease (SAGSD) was established in 2011 with a goal of improving care for children and adults with glycogen storage disease (GSD). The primary aim of the SAGSD is to facilitate interactions between families and health-care professionals to allow sharing of information regarding these rare conditions.

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Glycogen Storage Disease (GSD)

Glycogen Storage Disease (GSD) is a rare genetic disorder that affects the body’s ability to process and store simple carbohydrates, such as glucose.

Members & Families stories

See how our member and family stories can inspire you to live better with GSD.

Life is a challenge - together we are stronger

For some the challenge starts at birth as for Casper, 13 years old, with Glycogen Storage Disease type 1b. A potential life threatening disease, if a doze of cornstarch is missed his blood sugar will rapidly drop and he is at risk of having a seizure. Lifelong he needs to be meticulous and frequently take fingers pricks, day and night, to make sure his blood sugar is normal.

Others seek the ultimate challenge like Ludvig Landgren and Sarah Fager. On April 28, 2024 they will start a 250 km ultramarathon in the Namibian dessert. In 7 days they will run in temperatures likely to pass 40 degrees, be blasted by sandstorm, jumping and climbing over rocks and carrying all their food and equipment in their backpack. Even if they are prepared and ready for this race, they hope that by raising money for a good cause, will empower them even more and help them reach the finish line on May 4, 2024.

If you wish to donate and support Casper and the SAGSD, please click on this link to Ludvig and Sarah’s fundraising page:

Thank you in advance,

Ludvig, Sarah, Casper, and Marcus

The 6th SAGSD conference May 3 to 4 2024

Event details for the 2024 SAGSD Conference.

For the 6th time the Scandinavian Association for Glycogen Storage Disease will arrange a conference for doctors, dietitians, and patients at Klitterhus hotel in Ängelholm, Sweden.

The SAGSD will on May 3 to 4 arrange the 6th SAGSD conference on hepatic GSD. This is a combined conference where healthcare professionals sit side-by-side with patients and families enabling interactions and learning from each other. The SAGSD has invited several renowned speakers, amongst these are Dr. David Weinstein from the USA, and Dr. Terry Derks from the Netherlands. The Scandinavian doctors will also present and moderator the sessions and discussions with the purpose to improve international and Scandinavian exchange and cooperation. There are currently 74 persons registered, mainly from the Scandinavian countries Sweden, Denmark and Norway, also attendees from Finland, Germany, the Netherlands, and the USA are coming. In all, 17 are children or adults with GSD (types 1a, 1b, 3a, 9a, 9b, and 9c), 3 doctors and 4 dietitians from Sweden and Denmark have so far registered for the conference.

We are excited about the event and hope to see many new and old faces in Ängelholm.

Best regards,

Jessica, Louise, and Marcus

Board of the SAGSD

The SAGSD president was nominated the Rare Disease Prize 2024

President Marcus Landgren was nominated by the treasurer of our association, Louise Kjærsgaard Madsen, to the Rare Prize 2024 thus due to his work for the SAGSD. This price is awarded to persons or organizations that have done something extraordinary for people living with a rare disease condition In Denmark. Marcus was nominated for his never ending work raising awareness of GSD and arranging conferences for healthcare professionals and patients in helping patients to better treatment.

On February 29, 2024, the international rare disease day, the winner was announced at an event in Copenhagen. Marcus did not win the price, but it was heartwarming to be acknowledged for his efforts for GSD over the years since the SAGSD was founded in 2011.

The event was a magnificent experience and Marcus and his family also got the opportunity to meet Her Majesty The Queen Mary of Denmark, the protector of the association for Rare Diseases in Denmark.

Some of our sponsors

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Thank you!

“We at the SAGSD association are very grateful for the work that Ranknest has done with creating our new website at such short notice therefore we would like to dedicate this little thank you for them.”