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association for glycogen storage disease

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association for glycogen storage disease

The Association for Glycogen Storage Disease – AGSD was built up in 1979 so as to make an association which would be a centre for guardians of and people with glycogen stockpiling ailment (GSD) to impart, share their victories and concerns, offer helpful discoveries, give support, make a consciousness of this condition for general society, and to fortify examination in the different types of glycogen stockpiling ailments. It rouses for foster correspondence between relatives, experts, and others with the end goal of backing and data sharing. It does this by placing individuals in contact, giving data, issuing Newsletters and holding Conferences and Workshops.

The AGSD-UK holds an Annual Conference which for the most part happens at an inn on a Saturday in the harvest time. It is gone to by individuals with GSDs, their families and numerous medicinal experts and analysts. AGSD-UK individuals have communicated an inclination for the Annual Conference to be held in an alternate part of the nation every year, so this is the thing that the Executive Committee tries to accomplish. The AGSD is governed by an all-volunteer Board of Directors and Officers, and is advised by a group of doctors and medical professionals. The association has fostered publicity about the condition in local newspapers to the public aware of the condition, the need for research, and the need for support by the individuals with GSD. 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. The AGSD is active in fundraising and encourages its members to participate in local fundraising projects. Funds that have been raised have gone to support research, provided help in obtaining the pumps for nocturnal nasogastric feeding, assist in providing supplies when needed, and granted awards to help defray college expenses for individuals with the disease. 

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