Support Group Office Guidelines
Suggestions for PXE International Local/Regional Offices and Support Groups
PXE International's mission is three-fold: to support affected people and their families, to educate healthcare professionals, and to further research (among a thousand other tasks!).
Here are a few suggestions, ideas, and 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 or support group office leader, you will:
Be attentive. Proactively listen to other individuals, 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 admit what you 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 we have many studies ongoing to try to find the answers.
Be sensitive. 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.
Be prepared. Review the medical bulletins, the latest MemberGram, and the location of helpful information on the website, such as the FAQs and the PXE Vision columns by Pat Manson.
If you do make your area group active, you will be helping to support affected individuals and to grow the PXE International database for research use.
Here are some methods for helping us find affected individuals
Maintain confidentiality. 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.
Contact the medical community. Contact area ophthalmologists, retinologists and dermatologists - send them a card we have developed to give to their patients pointing them to our website. Contact local teaching hospitals and ask if they have seen any patients with PXE. Offer them information and bulletins. Attend a local meeting of your area dermatology or ophthalmology society as an educational exhibitor. We can provide you with the materials to hand out.
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 advertise it in your local newspaper and area newspaper, and on Craig's list, 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. You can show one of the PXE International webinars. We have found that people really want to speak about how PXE has affected them, and how misunderstood they have been. A PXE International representative may be able to attend as presenter if funds are raised for their travel and hotel. Suggestions for planning regional meeting.
In the news. 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.
Fundraising and publicity. Do a small fundraiser and get publicity - a yard sale, bottle collection, Pennies for PXE. If you are not in the US, then there are tax complications. In any case, before conducting any fundraiser for the organization, you must contact the PXE International office.
We can give you a great many more guidelines, but we will leave you with this for now. Feel free to call or email to request medical bulletins, brochures, letterhead, or newsletters. Let us know how we can best help you!