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It's not perfect. But we think this new XLH NETWORK FLYER, in what we are calling, for now, a beta release, can do a useful job for the audience to which it is targetted. We'd like to discuss that audience, the potential distribution network, the limitations we still find with the brochure, and the way we see of going forward for the future. 
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We think that people who would like to know about the emerging network are especially those families who have been affected by the syndrome in the past, or who may have a newly diagnosed child. As such, these people may find this flyer/brochure in the clinic where they have finally realised the diagnosis.
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For both kinds of paper, the pages should be aligned and printed so that the top of the inside sheet (Some Questions and Answers about XLH) is opposite to the front of the outside sheet (XLH Network Logo). The sheets could be carefully glued together to make a more robust flyer, or (so long as the orientation is correct) printed on both sides of a single sheet to be more environmentally friendly.
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We've been working to make the very best brochure we possibly can, with the hope that members of the F-HYPDRR mailing list will want to make their own printed copies and distribute them in the clinics they attend. We've always thought that the very best quality and professional aspect for this brochure would be the best advertisement of ourselves and our support network. But the quality of the brochure is also in the hands of the distributors, because of some limitations that we just cannot overcome in this beta version.
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1. Place the XLH NETWORK logo side upside down with the logo closest to you. 2. Fold the logo up and away from you and make a first fold with equal margins on either side of the text. 3. Then fold the text containing the big OMIM books in and underneath the logo page, and fold evenly. The back of the folded flyer now contains the images of the globes and all the contact information. 4. When you open the flyer up, you will see that the inside contains lots of information about XLH itself, while the outside pages contain information on the XLH NETWORK. 5. You may wish to experiment with a few folds, to establish the best professional presentation of a neat 3 way folded flyer. It's particularly important, for the best presentation of our network, that the front page, with the XLH Logo Network, looks even, flush with the edge of the flyer, and with a nice even margin all around the text.
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With the goal of presenting the best possible information about XLH, we consulted professional clinicians and researchers who carefully advised us on the aspects of the syndrome that we were presenting. We hope we have been able to take all those valuable comments and use them productively in this beta version. Where information is felicitous and beneficial is often thanks to their input, and where we have made errors of interpretation the errors are our own. We had hoped that by making a so-called .pdf version of the flyer, we would create a copy that would be printed exactly the same no matter which printer in the world it emerged from. So far, however, we are not satisfied with the professional presentation we have realised in this beta version (v1.10) because we have not been able to reconcile the results we've achieved from various of our printers. But we're releasing this beta version because we think it is at least, presentable, and will do its job for its target audience. How good a copy is actually presented in the clinic is, for this release, going to depend on the local distributors: us. Specifically, on the US Letter size, the problem has been in creating the best folds, with even margins from different printers around the world. The beta version we're releasing today can be made to fold pretty presentably, on all of our printers, but in some cases perhaps a small amount of paper will need to be trimmed from one edge. This trimming could contribute to a less than professional appearance, but moreover, in order to get the brochure to this point, we've had to make the font size of some sections very small indeed. This size is not acceptable, but we think all in all, the brochure is still useful. It may be, however, that members will be unhappy with the versions they manage to print, and fold, and so we would kindly ask that if there are any problems with printing and folding to achieve a really first-class job that you can be proud of, would members please contact Larry Winger who will send you a master copy on paper best suited for you. This master copy could then be xeroxed/photocopied locally for the best copies possible, and this is one way at least that we can get the distribution rolling.
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