Next Conference: June 2024 in Minneapolis, Minnesota
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The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD, their families, and medical professionals involved in treatment or research of any type of GSD. The focus of these conferences is meeting other people and families affected by GSD, gaining a better understanding of the GSDs and their implications, and learning about the latest research findings and upcoming studies.
Regardless of where you live, having a family member with a rare disease makes you feel isolated and so alone. Finding other families with a rare disease like GSD is such a god-send. It is such a great relief to meet others who REALLY understand what you are experiencing - because they are experiencing it too. That is what makes the AGSD Conferences so great - for the parents and the kids. The AGSD has provided this for families throughout the Americas: a group to find others who live 'life by the clock' of cornstarch doses, NG tubes, G-tubes, and feeding pumps; fitting clothing over those 'big tummys'; managing dietary restrictions; dealing with muscle pain & wasting, and excercise; and other issues too numerous to mention.
The AGSD Conference is a three day event and most people stay in the conference hotel to be close to each other. The location will move among sites around the country to allow convenient access to all the members.
The conference will host meals where people meet and greet each other. The weekend is filled with presentations from speakers on various topics related to GSD and 'break-out groups'. A 'Question and Answer' session with a panel of professionals is also a highlight for more casual interactions and an opportunity to discuss topical issues.
The AGSD Conference costs include a registration fee and meals for all conference registrants.
The benefit of eating your meals with the group is the fellowship and chances for sharing with other families and medical professionals. The children are always thrilled and amazed to meet and play with other kids who have GSD too [or a sibling with GSD]. The banquet room for Friday night is available for several hours after the meal for people to talk and share. The Saturday lunch is usually squeezed in between speakers and breakout sessions, so it is very convenient to be able to eat right there with the group and not have to leave the hotel to get food.
The AGSD understands that having a family member with a rare medical condition is very difficult, so by gathering each year, we affirm and encourage each other, and form some great friendships.
Due to technical issues, 2023 Conference presentation recordings and presentation files could not be processed for sharing.
Visit our YouTube Channel to view 2021 and 2022 conference recordings (multiple languages available).
About the association
The Association for Glycogen Storage Disease - AGSD - was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases.
This website provides basic information about the glycogen storage diseases. The information is intended to be of use to people affected by one of the glycogen storage diseases, their families, and other interested parties.
Some forms of GSD cause little in the way of illness, while others are life threatening. Included in this site is a description of the general symptoms, associated problems, current treatment, and long-term outcome for the most commonly diagnosed glycogen storage diseases. It does not do justice to the difficulty patients and their families' experience, and their deep desire for improved forms of treatment or ultimately total correction.
Association for Glycogen Storage Disease
1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702