On the 17th – 19th October the Australian Pompe's Association held its first National patient and family support forum in Melbourne.The objective was to bring everyone together and provide advice on diet and exercise and provide some advice on living with Pompe disease.
With Australia being so vast, similar size to Europe, but with only 33 patients the task of bringing members together was going to be a challenge. Members are living in every state and territory and some members had flights of over 4 hours to join the meeting. Three of our New Zealand colleagues also made the journey across the Tasman to be at the meeting. The forum was important as many of the members being so isolated had never met another Pompe patient or one who is not related to them. The opportunity to learn from one another and to just see how others have conquested the challenge of getting up or negotiating a few steeps was so important.