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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We had a great SAGSD patient association meeting in Havnsø, Denmark. The meeting this year was attended by Danish and Swedish patients from 7 families representing the types GSD Ia, GSD Ib, GSD IIIa and GSD IXa. The purpose of the meeting was to get to know new families and give each other support.
A new board member was also decided on. We welcome Anna Tómas-Aminoff replacing Jessica Andersson. We also thanked Jessica for the last two years and all the work she has done for the association.
The dates were also decided on for the next conference.
Save the dates for the upcoming SAGSD conference for patients, dietitians and doctors in Ängelholm in May 29-30 2026.
We are starting to receive some 2024 X-mas donations and they will go to the members to our next patient meeting in Havnsø, Denmark from May 2 to 4 in 2025.
Thank you ART Project for your donation!
Glycogen Storage Disease (GSD) is a rare genetic disorder that affects the body’s ability to process and store simple carbohydrates, such as glucose.
See how our member and family stories can inspire you to live better with GSD.
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
Thank you all for participating SAGSD 6th GSD conference for doctors, dietitians, nurses, families and patients at Klitterhus Hotel in Ängelholm, Sweden 2024.
Its lovely to see the connecting between healthcare professionals, nationally and internationally together with patients, adults and kids. Sharing and providing information about this rare condition. Giving support and putting people in contact. A combined conference where healthcare professionals sit side-by-side with patients and families enabling interactions and learning from each other. Many interesting lectures and sessions were held from several renowned speakers. Together we improve the care for children and adults with glycogen storage disease (GSD). This has only been possible due to so many peoples interrest in attending and giving their support, both morally and economically! Thank you all! We hope to see many new and old faces in Ängelholm at the next conference the 8-9 May 2026..
Best regards,
Jessica, Louise, and Marcus
Board of the SAGSD
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.
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“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.”
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).
Our information does not replace or go above personalized medical advice.