June 02, 2007
SWAN - Syndromes Without A Name
It is plenty hard enough to care for a child with special needs when we know what's wrong. Knowing what's wrong tells us a little bit more about what to do, what might or might not work to help, gives us an extra tool for talking to schools, insurance companies, and other support resources. But when you don't have an official diagnosis, doesn't that mean nothing is wrong? Of course not! But it makes all those other aspects just that much more difficult.
We are glad to find out that there is an organization to provide support and help to parents of children with special needs whose special needs don't quite fit into a nice tidy package.
Syndromes Without A Name (SWAN):
USA: http://www.undiagnosed-usa.org/
UK: http://www.undiagnosed.org.uk/
Australia: http://www.swanaus.bigpondhosting.com/
"It is estimated that between 30 and 40% of special needs children do not have a definitive diagnosis."
Here are some more articles about the problems of lacking a diagnosis and what you can do.
Crow, Kristyn. Agonizing Journey: The Undiagnosed Child. 24 Jul 2006 09:12 PM Families.com: http://special-needs.families.com/blog/agnoizing-journey-the-undiagnosed-child
GM.TV: Undiagnosed illness: http://www.gm.tv/index.cfm?articleid=20188
Posted by pfa at 11:26 AM | Comments (0)
March 17, 2007
Let's Face It, AboutFace USA, & SlideShare
Many thanks to Marita Inglehart for inviting us to speak as part of the Multicultural Affairs Committee series on disabilities and dentistry. The presentation slides are available on SlideShare.
Let's Face It Comes to Michigan: Lessons Learned about Web Sites for Persons with Facial Difference: http://www.slideshare.net/umhealthscienceslibraries/lets-face-it-comes-to-michigan-lessons-learned-about-web-sites-for-persons-with-facial-difference/
In SlideShare, there are other presentations about persons with facial difference and how to support them. Highlighted here are those from AboutFace USA, in particular a presentation to the UNLV School of Dentistry that includes information about clinician-patient communication with persons with facial difference.
AboutFace USA: http://www.aboutfaceusa.org/
SlideShare: AboutFace USA: http://www.slideshare.net/aboutfaceusa
SlideShare: AboutFace USA: AFUSA UNLV Presentation: http://www.slideshare.net/aboutfaceusa/afusa-unlv-presentation
Posted by pfa at 05:48 PM | Comments (0)
October 25, 2006
Update: American Academy of Maxillofacial Prosthetics
When we have updates or changes to our organizations list, we may not always be able to post those changes to the website immediately, but we will post those updates here.
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American Academy of Maxillofacial Prosthetics
"The Academy is devoted to the study and practice of methods used to habilitate esthetics and function of patients with acquired, congenital and developmental defects of the head and neck."
Dr. Steven P. Haug
Executive Secretary/Treasurer
1121 West Michigan Street
Indianapolis, IN 46202
Tel: 317-274-5571
Fax 317-278-2818
Email: sphaug@iupui.edu
Web: http://www.maxillofacialprosth.org/maxillo/maxillofacial/HomeContent.htm
Posted by pfa at 08:50 AM | Comments (0)