Informal Offices or Regional Support Groups

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Examples of Suggestions for Local/Regional Offices and Support Groups:

PXE International, Inc.

PXE International, Inc.'s mission is two fold: to support patients and to further research (among a thousand other tasks!).

This document is to provide you with a few suggestions, ideas, thoughts that might help you as you help us. Please do not feel that we are asking you do any of these things. Each area group will vary greatly in its character, area of interest and level of involvement.

As a regional office leader, you will:

  • Listen to other individuals attentively, waiting to offer the story of your involvement/concerns until after you are sure the other person feels they have been heard. It is important that you share your story - others are happy to hear about your experience with PXE, but it is very important that they have the opportunity to tell their story first. You are probably the first person other than a doctor with whom they have talked about PXE.
  • Be professional, readily admitting what we know and don't know. Offer to try to find out. Even if you are a medical professional, it is critical to remember that much about PXE is not known, the literature is inaccurate in a number of instances and that we have many studies ongoing to try to find the answers.
  • Give each member the space that they need. Some will wish to pour their hearts out, others will require only a bulletin or brochure, or wish never to be contacted again.

If you do make your area group active, you will be helping in supporting affected individuals and in building the database for research use.

Here are some methods for helping us to find affected individuals:

  • Write area ophthalmologists, retinologists and dermatologists sending them the patient packet and requesting that they recommend patients write to PXE International, Inc. We have a standard packet. Please request as many as you need from us or modify the packet as you see fit, perhaps personalizing the physician letter. It is critical that you follow PXE International and national and international standards for confidentiality. You are to never give anyone else the name of an affected individual unless the individual gives you written permission. You may never share information with medical professionals - all of that is done centrally through the PXE International main office after individuals have been assigned a code number. Identifiers are always stripped from any outgoing information.
  • Call a meeting. Yes, you might be the only PXE person you are aware of in your area. But if you call a meeting (use your home or a church, synagogue or community hall) and publish it in your local newspaper and the area newspaper, you will get attendees and people calling who say they can or cannot come but wish to be aware of the offerings of PXE International. We can provide you with a meeting agenda. It only need be very simple. We have some videotapes that can be used. We have found that people really want to speak about how PXE has affected them, and how misunderstood they have been.
  • Contact local teaching hospitals and ask if they have seen any patients. Offer them information, bulletins, brochures.
  • Attend a local meeting of your area dermatology or ophthalmology society as an educational exhibitor. We can provide you with the materials you need.
  • Get a feature story about yourself in the newspaper - the community section runs stories like this all the time - your ability to create a support group, communicate with doctors, persevere despite the odds.
  • Do a small fundraiser and get publicity - a yard sale, bottle collection.

We can give you a great many more guidelines, but we will leave you with this for now. Feel free to call and request additional bulletins, brochures, letterhead, newsletters. Let us know how we can best help you!

Children's Cardiomyopathy Foundation, Inc.

We currently have support groups in the US that meet at hospitals and are volunteer-member run. The volunteer members work with their local hospital to secure a date and meeting room. The volunteers receive reimbursement from us for group refreshments, postage to mail out meeting flyers etc.

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