More questions: 10 years later from glycogen storage disease patient support groups in Europe

Abstract

In 1990 the first Fulda Workshop on Glycogen Storage Disease (GSD) type I was held in November. Eight adult representatives from Patient groups in the UK, USA, Germany and the Netherlands were invited to come and set up an information table of posters, leaflets etc. We were also asked to present a short list of questions that can occur to parents after the initial shock of diagnosis and treatment of GSD has been made. These “Questions of Parents” were presented on the final day. Ten years later, patient representatives from Europe were invited to present “More Questions: 10 Years Later”. On both occasions the questions centred around six broad areas: (1) treatments, (2) specific problems, (3) family planning, (4) long-term effects of having GSD type Ia and Ib, (5) research and (6) general questions.Conclusion: As representatives of GSD support groups, we hope that firm decisions can be agreed for common dietary and pharmacological treatment and follow-up procedures within the boundaries of cultural differences and financial circumstances. We anticipate that if there is a third Fulda workshop in 2010, the answer to the question “Is there a common set of protocols and guidelines among doctors and hospitals as to the correct treatment for glycogen storage disease type I?” will be a firm “Yes”.