Planning a Regional Meeting

Would you like to hold a Regional PXE Meeting in your area?

A Regional PXE Meeting is an amazing opportunity to educate your community about PXE. The meeting includes a presentation by a PXE International representative, often Sharon Terry, CEO, or Dr. Lionel Bercovitch, Medical Advisor for PXE International, and ample time for questions and networking with other community members.

If you are interested in holding a regional meeting in your area, please look over our suggestions below and then contact the PXE International office at 202.362.9599 x222, or email Terry Mac Dermaid. We would love to help you get involved!

Suggestions for Planning a Regional PXE Meeting

You should start the ball moving and begin planning about five to six months ahead. PXE International can help you each step of the way. Here are a few simple suggestions to get you started.

  1. First, determine regional interest! PXE International can help you contact affected individuals in your area. You can email Terry Mac Dermaid or call 202.362.9599 x222 for a list of local PXEers who have given us permission to share their contact information. 
  2. Contact PXEers via email, mail, FacebookTwitter, and/or by phone to ask if they would be interested in a meeting. If you need mailing materials, PXE International can supply letterhead and envelopes.
  3. Contact the dermatologists and ophthalmologists in your area and ask them to send a flyer to their patients with PXE, inquiring about their interest in attending a meeting. We can provide the flyers.
  4. If you get 15 or more interested attendees, contact Terry Mac Dermaid to see when a speaker from PXE International could come to your area. To save money, we try to dovetail these meetings with travel for which PXE staff are already scheduled.
  5. Find a venue for the meeting! Local hospitals, churches, schools or community centers are often free of charge. Sometimes PXE International has contacts in the area. You'll need to find an LCD projector and screen (or light colored wall) for the presentation, and you'll need to decide if you want to provide refreshments.
  6. Send out announcements of the agreed upon time to PXEers and physicians.
  7. Most of the time you will want to be sure your meeting is planned around already scheduled PXE staff travel so that there is no additional cost to you. If you do want to have someone come and their travel is not covered for another event, then you will have to raise the funds to defray travel and lodging, as well as any refreshments.

Let us know how we can help, and we hope to see you soon!