|
|
National Psoriasis Foundation |
The biggest and best psoriasis web site devoted to the
patient (not the doctor). NPF on-line
has sections for members in which virtually all the foundation's
printed material is available electronically. The site also hosts
regular scheduled live "forums," an extensive on-line chat
area, and has impressive sections
for kids and young adults. If you have psoriasis, this site has
got to be on your bookmarked or favorites list.
|
|
 |
Michael Paranzino's
Washington D.C.-based lobby to increase funding for psoriasis research and
ensure access to the full range of treatment therapies for all flakers.
Also read the FlakeHQ
Interview with Michael. |
|
|
Psoriasis Hall of PShame |
Sad to say, we need this site, which has been compiled by Ed Anderson
(newsgroup, pinch.com). Here you will find the stories of sham, quackery, and simply
misleading claims about P treatments and products. Already Ed's been threatened by
lawsuits (none of which has materialized, as far as I know). Read
Ed's FlakeHQ Interview (Nov-Dec '05) here.
Visit Ed's Skin Page for gateway
access to other sites, including a table of "search for" shortcuts that
will help you find just about anything regarding skin diseases. |
|
|
Psoriasis Online Toolbox |
Perhaps the most
up-to-date "shortcuts" page to Online Resources for things-psoriasis,
things-skin-disease, and things-medical-goverment-regulatory, etc.
Brought to us by flaker-web-pioneer Ed Reiss (the fellow who launched the
National Psoriasis Foundation's first web site). Also a "List
O'Links" to sites Ed Reiss finds recommendable, and other fine "tools" the
curious, the academic, the medical practitioner or the patient will find
useful. Also read the FlakeHQ
Interview with Ed Reiss (Sep-Oct '06) here. |
|
|
ShockingPsoriasis.com |
Mike H. built this site to illustrate what
psoriasis looks like and much, much more. This is where I'll send
people who ask me "What's that?" and point to any of a number
of my body parts. |
|
|
dmoz
open directory project: "Psoriasis" |
Here's a directory of Psoriasis sites
on the web assembled and described by people who use psoriasis
sites on the web. It's about time. Check it out.
|
|
| Newsgroup: alt.support.skin-diseases.psoriasis
... and ...
its Archives |
The best metaphor I can come up with for this distinctive
place that has been nurtured by Ed Anderson is "the flakers' roadhouse." You can
and will find all the camaraderie (and the occasional brawling) you would expect to find
at any establishment for people who are very diverse but have psoriasis in common. This is
the place to go if you want a second opinion, not necessarily from a derm. It's also a
place to go if you've got something to say that may help others. Ed's Archives turn the
whole experience into a useful reference tool. (Read
Ed Anderson's FlakeHQ
Interview (Nov-Dec '05) here.) |
|
| Psoriasis NewsGroup FAQ: http://www.psoriasisfaq.com/ |
Kim Malo's page of links and other things
you need to know to participate in the online psoriasis community.
Very good stuff. |
|
|
Dave'sPsoriasisInfo |
When Dave W. was diagnosed psoriatic he went hunting for
information. His range included the Internet and a lot of what he found there made
him mad. He filled a notebook with printouts (of what, we presume did
not
make him mad) and then he took this to a dermatologist to see what could be done about his
own case. At Dave'sPsoriasisInfo web site, he confesses he's mostly posted
the contents of his notebook and embarked on a campaign to keep adding-to and updating.
So, you can go here to find what makes Dave mad (no bones about it) but, whether
you want to or not, you're going to learn quite a bit, too.
|
|
|
Dermatology
Image Atlas (dermatlas.org) |
A growing and impressive resource by Dr.s
Cohen and Lehmann of John Hopkins University. Nicely designed for
answering the question "What does it look like?" Extremely
layman-friendly. Did you know P-plaques have names? I guess
there are different kinds of plaque lesions just like there are
different kinds of clouds in the sky.
|
|
|
Dead
Sea Holidays |
John B.'s U.K.-
based holiday planning helper-site for folks interested in visiting this
world-famous climatotherapy hot-spot for flakers. You can also
purchase Dead Sea products for home-based use through this site.
(Currency is expressed in British pounds; international orders may or
may not be accepted.) |
|
|
Jerry
J.'s Book Page |
If you want to buy a book (or books)
about P, do so from this page. Part of the proceeds go to the
National Psoriasis Foundation. And I've not found a more
comprehensive list anywhere. (Note: several on-line booksellers
are involved. Jerry has aggregated them and their P-titles into
a single convenient location.) |
|
|
PsoriasisGroup.Com |
A
new web site [August 2006] launched by T. J. Brownfield in my home state
of Colorado. Right now this site is like a “fully loaded luxury
automobile” sitting in the showroom and waiting for riders. As far as I
know, it is the only flaker site set up to accommodate user blogs,
messaging, chat, photo sharing, surveys, profiles and plenty of room for
future editorial content.
|
|
|
PsoriasisSupport.com |
A virtual community in the making.
This site, established in 2002, is a high-tech, high-touch, commercially
supported membership-collecting, P information, news, and group
communications site created by Biogen, makers of Amevive, one of the
biologic drugs approved for the treatment of psoriasis.
Much of the information here is also available at the National Psoriasis
Foundation site, but Biogen is also stocking their site with dynamic
content including links to news wire services that will
"capture" breaking news relating to P.
|
|
|
The
Soap Lake Conservancy |
Will
Soap Lake, Washington, become the U.S. equivalent of the Israel's Dead
Sea? We hope so, and this new organization is working to make it
so. If you're looking for a place to go for spa-like P
therapy, check out this site and then read about Linda L.'s experience
there in "Soap Lake."
Also read Sherry
Decker's article about spending time at Soap Lake.
|
|
|
Turkey:
Kangal Fish Spring Facility |
Home of the famous
"Dr. Fish," small and toothless, these creatures consume
flakes while the patient "soaks up" the palliative properties
of the water and the spa. Whether or not you ever make it to
Kangal to try "the cure," this web site is fun to visit!
|
|
|
PRP
Online Support Group |
Often confused with
psoriasis, Pityriasis Rubra Pilaris is a similar skin disease but
much rarer than psoriasis. This is an international support group
and resources web site for people with PRP. |
|
|
Healing Psoriasis - John O.A.
Pagano |
Dr. John Pagano's
web site featuring his famous dietary approach to healing psoriasis.
His best-selling book, Healing Psoriasis: the natural Alternative
can be purchased here as well as his cookbook for psoriatics. Also
read the FlakeHQ Interview with Dr. Pagano. |
|
|
The Mayo Clinic - On Psoriasis |
The Mayo
Clinic is a venerable, multi-location medical institution that now has
an online database of facts about many diseases, including psoriasis.
Articles under “Psoriasis” include an “introduction,” “signs and
symptoms,” “causes,” “risk factors,” “when to seek medical advice,”
“treatment,” and “self-care.” To me, the real value in the site is its
concision. If you’ve trolled the National Psoriasis Foundation web site
attentively, you won’t find anything new at MayoClinic.com, but they
cover the basics — and some of the details — in far fewer words. For
the casually interested, it presents a much less daunting introduction
to our disease. Most importantly, for people who need to know more,
the articles here conclude with a list of links to other sites,
including the National Psoriasis Foundation. |
|
|
My
Skin's On Fire (web site) |
This is the "official" web site for Fred Finkelstein's
documentary, My Skin's On Fire. You can view a short clip
of the program and purchase the DVD here. You can also send email
to Fred from the site. Fred's got plans to expand the site,
hopefully in 2007.
Also read the FlakeHQ Interview with Fred Finkelstein, and
Fred's memoir about life during production and after release of the DVD. |
|
|
Other Sites... |
http://www.psoriasis-help.org.uk/
- UK-based psoriasis support group moderated by Guy Strickland
Psoriasis Connection
Psoriatic Arthritis Support Psoriasis
Directory Page (Flakerchat ... may require Active X install)
Psoriasis
Support (an MSN group facilitiated by Sharee
S.) Skincell
(UK-based forum site for on-line chat and message posting.
Requires free registration.)
BeyondPsoriasis.com
(a support site sponsored and created by Genentech, with the National
Psoriasis Foundation and Dermatology Nurses Association
"collaborating." For more detailed information, read the
section on Raptiva in the Biologics page
here at FlakeHQ.) |
