How to Contact Us

Questions about your case - If you have questions about PN, your case, which doctors are best, and so on, please take the time to join our friendly forum and post your questions there. That way many people can help answer your questions, and many can also benefit from the answers. If you are somewhat embarrassed about certain details of your condition, don't worry, others will understand. Many of us have similar problems that we too felt inhibited to talk about. But we have overcome our fears because this is a community that is supportive, not judgmental.

Suggestions about the website - These are welcome and can also be handled on the forum in the Community section. Perhaps you would like to suggest another question for the FAQ, or another image, or a link, etc. Or perhaps you have a website question, or just want to chat about how to best approach designing the website, etc. Or maybe you'd like to help improve the site. Or you've found a broken link, the bane of older websites. Whatever it is, we're all ears! We need lots of help to make this a good site.

I need to contact you directly - We can handle that too. This website is divided into two parts: the forum side and informational side. Some of the people behind this website are:

Website/Information Manager – PierreQC and Jack Harich
Performs the administrative and technical tasks required to maintain the website and the forum. Maintains all of the informational pages that are part of the website that tell everything you ever wanted to know about PN.

The Core Group - AmyB Jean M, Jessica, JudyB, LesM, and PierreQC.
In addition to actively participating in forum discussions, this group of dedicated people works together to help the forum achieve its goal of maximizing the effectiveness of the way online discussion can help the PN community. The Core Group is responsible for site policy and for implementing the site’s Code of Conduct. It endeavors to maintain civil discourse among forum members and to guide heated discussions back to acceptable parameters, as defined by the Code of Conduct Rules. Decisions are made on a consensual basis, with democratic input from all. If you should need to contact them directly, remember, that on the forum you can click on a person's name and send them a private message or an email that way. You can also contact them all through:

You can contact them all through:

Surgery Coordinators - GregT and JudyB
GregT is the coordinator for the Nantes surgery groups for North Americans. He has forged many important contacts in the PN community in the United-States as well.
JudyB is the coordinator for the Nantes surgery groups for Europeans. She is also very involved in issues related to PN primarily in Europe.

News Article Queries - Email these to the information manager. A query should summarize what you want to write about, and if it's not obvious, why it's important to PN patients. We will reply within a week.

Articles can be as short as one page. There is no reasonable limit on article length. You are encouraged to include links and images, and to write in a simple, matter-of-fact style.

Articles are for information of an important nature that is too long for a forum message.

Material Submission Format - The preferred way to submit short material (about 2 pages or less) is in the body of an email, with attachments for images. Long material (about over 5 pages) can be sent the same way or as a PDF or Word file attachment. For medium length the choice is yours.

If your material requires careful page layout, use PDF format regardless of length. If you are using Word to create a document, try File, Save As, File Type PDF. If you can't produce a PDF from Word, send it in Word format.

Note - For those involved in testing a cheap, workable way for members to edit web pages, see How to Edit a Web Page.