As many organizations know, there is nothing as powerful as bringing a patient community together face to face. The Australian Pompe’s Association (APA) experienced this first hand in October, when they held their inaugural Patient and Family Support Forum. It was the first official gathering of the Australian and New Zealand Pompe patient communities, and was attended by over 60 patients, family members, friends and carers. There were 10 speakers who covered topics ranging from physiotherapy to diagnosing Pompe. The APA was especially excited to have Dr. Barry Byrne, a well-known American physician and International Pompe Expert, who made the 16 hour flight to Melbourne to participate and present about diet, exercise and advances in Pompe treatment.
Though the APA has been a formal organization since 1997, the meeting was the first of its kind for this community. When asked why now felt like the right time to host a national conference, current APA President Raymond Saich said, “with Australia and New Zealand being so vast and covering more than 5 time zones, and so few patients overall, many of our Pompe patients have never met another patient (or one who is not related to them). It was wonderful to see all the patients, friends and carers come together to talk of how they cope with the day to day issues of living with Pompe. No one understands Pompe like another Pompe patient.”
All of the participants found it incredibly useful to meet face to face to have an opportunity to share experiences and challenges. One participant shared, “all the presentations were wonderful but the patient stories touched my heart.”
Congratulations to the APA on this wonderful achievement! If you are interested in learning more about this meeting, or to talk to Raymond about his advice in hosting your organization’s first national conference, please contact the APA at firstname.lastname@example.org.
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