| LINK
TITLE |
DESCRIPTION |
|
Hailey-Hailey Disease Society |
501(c)(3) nonprofit
organization formed to provide support, education and correct information to
HHD patients, the healthcare communtiy and the public regarding
Hailey-Hailey Disease. Outreach includes this website, the website forum and
management of TalkHHD, a Yahoo Support Group. |
|
TalkHHD
Support Group |
International group of over 300 members. Support through group email and annual
Gatherings (mid-May). |
|
OMIM
- Hailey-Hailey Disease #169600 |
Description
of Hailey-Hailey Disease. Very technical. Large bibliography. Checked
June 2009. Recommended. |
|
OMIM
- ATP2C1 *604384 |
Mutations
in ATP2C1 cause HHD. Description and list of mutations found. Very
technical. Large bibliography. Checked June 2009. Recommended. |
 |
Excellent, authoritative
and VERY technical description of the mutations and aberrant protein causing
HHD. Checked June 2009. Recommended. No longer available to the public. |
|
The
British Association of Dermatologists |
Pretty
good description, but greatly understates the nature of outbreaks.
Please note that HHD itself DOES NOT SMELL - only secondary infections are
malodorous. Checked June 2009. |
|
Hailey-Hailey
and how it compares to pemphigus. |
A
one page site from the The National Pemphigus Foundation (USA). Site
updated 16Mar2005.
Checked June 2009. |
| The
National Registry for Ichthyosis and Related Disorders |
Site
hosted by University of Washington (USA) and featuring a Registry (now
closed) for
sufferers of Ichthyoses and related disorders including Hailey-Hailey
Disease. Also has links to information and resources about Ichthyosis.
Checked June 2009. |
 |
emedicine
online. Comprehensive medical description of HHD.
Checked June 2009. Recommended. |
|
|
Although this organization has an
amazing amount of information about rare "orphan diseases," its
description of Hailey-Hailey Disease as a synonym for pemphigus is
completely incorrect. NORD has been contacted for over four years, and while
they have agreed that their information is incorrect, they have done nothing
to correct it. Checked June 2009. NOT RECOMMENDED. |
| Dermatlas |
Dermatlas
- enables health care professionals and patients to access high
quality dermatology images on the Web. Type "hailey hailey" in the search
box. Checked June 2009. Recommended. |
|
Online
Medical Dictionary |
Medical
terms in an on-line, searchable form. Checked June 2009. Link OK. |
| Who
Named It .com |
Seems
its down to Drs. Hugh Edward Hailey and William Howard Hailey (1939).
Checked June 2009. Link OK. |
Dermnet - New Zealand |
Nice site by the New Zealand Dermatological Society - has a section on HHD
under 'Skin Conditions' Checked June 2009. Recommended. |
| The
Doctor's Doctor |
An large collection of literature citations, but getting quite outdated -
last update 2002. Very technical description of the disease (for medical
types) - don't let it scare you. Checked June 2009. |
