High Energy at the Australia Regional Meeting


APRIL 22, 2011
High Energy at the Australia Regional Meeting
For more than two and a half hours the group of 12 discussed the ins and outs of PXE.


The PXE International meeting in Fremantle, Western Australia, on April 20, 2011 was a smashing success. For more than two and a half hours the group of 12 discussed the ins and outs of PXE. Sharon Terry presented information about the various signs and symptoms and attendees asked questions. The sharing and laughter in the group was wonderful. ‘Older’ PXEers shared some funny stories about their experiences, and the younger folks were eager to learn. Some of the group met eight years ago when Sharon presented in WA. The group has met off and on over the years, and so some people knew each other before this meeting. This group has a great deal of energy, and we won’t be surprised if we see some interesting and exciting activity in Australia! "I was so excited to return to Australia", said Sharon. "The people are so warm and friendly! I thoroughly enjoy being with them. I haven’t laughed so much at a PXE meeting!"

The meeting, and Sharon’s travel, was supported by the Office of Population Health Genomics (OPHG), Department of Health, Western Australia. Sharon spoke at their meeting, Awakening Australia to Rare Diseases. PXEer Chris Morton and his wife, Dorothy, attended the Rare Disease meeting with a scholarship from the OPHG. We are very grateful to OPHG for this support and for their leadership and vision for rare diseases!

To learn more about PXE International regional meetings and to see if a meeting is coming to a city near you, visit our Regional Meetings page.