Regional Meetings are a Wonderful Opportunity


APRIL 1, 2011
By Kelly Harris, Information and Education Coordinator, PXE International

This article first appeared in the Spring 2011 PXE International MicroMemberGram


Living with a rare disease can be an isolating experience. Often no one, not even your doctor, knows much about our condition, and explanations are frequently required. Many PXEers may never have encountered anyone else with their disease. For these people, their loved ones, and other members of the community, PXE regional meetings are incredible opportunities to connect with affected individuals in their area and get answers.

PXE International has an exciting agenda of regional meetings planned for 2011. The first meeting of the year took place in Irvine, California on February 23, and was a great success. Sharon Terry, twelve individuals and one tiny baby, met and discussed PXE. “I am always really moved by the eagerness of our members to hear the latest news on PXE,” said Sharon, “I present a 90 minute overview of PXE, and the participants ask such good questions. These wonderful people are clearly very interested and knowledgeable about their condition.” She stressed how moving it was to see some of the individuals meet other people with PXE for the first time.

The second meeting of 2011 occurred in Vancouver, Canada. The small but enthusiastic group included one person who drove six hours to attend. The group decided they wanted to have another meeting soon, and have scheduled it for June 8th, 2011. Their commitment to strengthening the PXE community is inspiring.

In 2011, regional meetings will be held all over the world. We will be gathering in Perth, Australia; Syria; and Montreal, Canada. Due to the recent tragedies, we will not be able to hold our planned Tokyo meeting (please consider donating to the American Red Cross.) To find out more information, register to attend, or if you are interested in planning a regional meeting in your area, please visit our Regional Meetings page.