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On March 10th 2013, Chinese Pompe patients came together to establish the Pompe Rare Disease Care Center and to have their first meeting. The meeting was held at Beijing University First Hospital in Beijing. There were 35 people attending, 12 of them were patients of which 4 need night time ventilation.

 

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Group photo of the first Pompe meeting in China 

 

At the meeting videos of several patients were showed, so experience and knowledge could be shared to the group. Contributors to the videos came from China, Hong Kong, Singapore and the Netherlands. By these videos the Chinese patients got a better understanding of the practice of treatment and care in the different countries and the international collaboration between the many patient groups around the world.

Physicians provided presentations on several topics such as the clinical information on Pompe disease, progress in research, physical rehabilitation and dealing with the social and emotional problems of having Pompe disease. Also one father, whose daughter is affected with Pompe disease, shared his experience. The Pompe patients are supported by the Gaucher patients who shared their experience with them.

 

dr. huang yu

Dr. Huang Yu from the First Hospital in Beijing presented on the current status of Pompe disease in China and about the diagnosis and treatment of Pompe disease.

 

father explaining on his daughter

A father with a daughter with Pompe disease gave a presentation on the journey of his daughter.

 

As several participants had to travel far to be able to attend the meeting it was made possible to also get free medical examinations at Beijing University First Hospital, this included a pulmonary function test, electrocardiogram, echocardiogram, blood chemistry etc.

As soon as the meeting was finished the patients started to write letters to the minister of health and health authorities to ask their support to make treatment available in China. The Pompe patients in China now have a face and can be seen on the website they created, where you can read stories, watch videos and get information on Pompe disease.

 
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