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Jul-Aug 2008 Briefing
In This Briefing:
Heading for Orlando
— National Psoriasis Foundation 2008 Annual Conference, August 15 &
The National Psoriasis Foundation has been doing an annual meeting forever. It’s probably the largest congregation of psoriatics in the United States. ‘The Meeting’ gives a flaker like me a weirdly warm feeling. Psoriasis is something most of us like to keep as private as possible, yet here we are for a couple of days surrounded by people so like us it’s uncanny.
For me, what’s so fascinating about the experience is how quickly and comfortably we fall into ‘normalcy.’ Before you know it, at a social function, or a meal, or between workshop sessions we are talking to each other like people who don’t have psoriasis. It’s as though our shared affliction cancels itself out. And it feels like this even when we’re talking about psoriasis, which we almost always are during ‘The Meeting.’ I really shouldn’t be surprised. It seems anything that can be shared — good things, bad things — can compel people to form groups in which they feel better than they do in the population at large.
A special reason I’m excited about this year’s meeting is my being part of a special session with the working title “The Future of Psoriasis Advocacy on the Internet” (Saturday, August 16, in the ‘Cloister’ room, Buena Vista Palace Hotel, 10:30-11:30am). This is a roundtable session involving six people representing six “advocacy” psoriasis web sites. Here’s the lineup (in alphabetical order by last name)
* These people have been interviewed inside FlakeHQ, click here for the Interviews Directory.
During the session, the roundtable will engage in conversation about possible ways psoriasis web sites might collaborate to more effectively disseminate information about the disease and current treatments AND propel efforts to find a cure and equalize the availability of effective treatments throughout the world.
Sounds like a high-minded enterprise and it is, but the Web makes it doable if a significant number of psoriasis web sites collaborate on key themes and events. There is no reason that small web sites, like four of the six represented on this roundtable, can’t become significantly more influential than the sum of their parts by working collaboratively on specific projects. At least, that’s what we intend to explore while we’re in Orlando, at ‘The Meeting.’
I hope every registrant who operates a website, blog, wiki or email list about psoriasis will attend the roundtable session on Saturday morning. And for those of you who can’t come but would like to keep abreast of what becomes of this, send me an email and I’ll add you to the list. Also, check back here over the next six weeks. As the six of us plan the roundtable presentation in Orlando, I’ll add specifics here. Keep an eye out for FLASH messages on the FlakeHQ home page.
If you're concerned about the rising costs of health care in the U.S., you should read this article before it goes away. The link takes you to the AARP Magazine online, specifically to the article whose title I'm using for this piece in the Briefing. The advent of biologic drugs really raised the already high cost of therapies available to treat psoriasis, and meds are only one part of the cost-of-care picture. It serves us all to be aware of the issues affecting our health care costs and this article summarizes many of them.
In Flaker Creativity this update, Sherry S. adds a new ekphrastic, "Red Beach." I've finished "post-scripting" the last two chapters of Flake: Confessions of a Psoriatic, and a short story, "Byron & Talia." Enjoy!