|
Reviewed Resources:
1.Melorheostosis.com
Links to research, articles, personal histories of patients and a discussion board.
URL:http://206.139.180.51/default.htm
2.Alstrom Syndrome of Canada
Information and assistance for concerned parents of children with this rare genetic disorder. Information on workshops, conferences, and medical research.
URL:http://alstromsyndrome.ca
3.Chorus Notecard Document
A definition of moyamoya disease along with clinical and radiographic finding.
URL:http://chorus.rad.mcw.edu/doc/01076.html
4.Cleidocranial Dysplasia
Find information about this rare genetic disorder, chat and more topics for discussion.
URL:http://cleidocranial_dysplasia.homestead.com/page1.html
5.Tyrosinemia
For all people interested in connecting with others with this disease.
URL:http://communities.msn.com/tyrosinemia/home.htm
6.Kindler Syndrome
An article and case study of this rare disease. Includes links.
URL:http://digilander.iol.it/camdic/KINDLER.html
7.Corpal
A support group for the families and carers of those with Agenesis of the Corpus Callosum, and Aicardi Syndrome. Information, reports and newsletters.
URL:http://freespace.virgin.net/jan.webster/index.htm
8.Tyrosinemia Group
Information about tyrosinemia, a rare metabolic disorder. Includes lists of links to other support groups, sources for low protein food, recipes, message board.
URL:http://groups.msn.com/tyrosinemia
9.Yahoo! Groups : Degos Disease
An email group offering description of what to expect upon joining, joining instructions, post and read mail.
URL:http://groups.yahoo.com/group/degos_disease/
10.EM at Yahoo! Groups
A support group for those willing to help others who have Erythromelalgia. Includes joining instructions.
URL:http://groups.yahoo.com/group/EM
11.Danny's 11q Information Page
A mother shares her story about having a son with Jacobsen Syndrome.
URL:http://hometown.aol.com/deidran/danny.html
12.Cerebrocostomandibular Syndrome
Selected medical images.
URL:http://matweb.hcuge.ch/matweb/Selected_images/Developmental_genetic_diseases/Cerebrocostomandibular_syndrome.htm
13.Med Help: PKU
A description of phenylketonuria along with a look at the causes, incidence, symptoms and treatment.
URL:http://medhlp.netusa.net/lib/pku.htm
14.Cystinosis Central
Information about this disorder, conferences, data for physicians, updates and links.
URL:http://medicine.ucsd.edu/cystinosis/INDEX.htm
15.Fibrous Dysplasia Support Online
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
URL:http://members.cox.net/fdsupport/index.html
16.KUMC Pediatrics: Approach to the Dysmorphic Infant
Dysmorphology is the study of abnormal form (congenital anomalies)
URL:http://nursing.umaryland.edu/mch/courses/639/dysmor~1.htm
17.Tiger's Place
Personal site about PKU. For those that are struggling with this rare disease. Hoping it will help other's to gain a better understanding. Forums, information, poems, and recipes.
URL:http://pkuandmore.tripod.com/
18.National PKU News
Site includes news and information about phenylketonuria, a rare inherited metabolic disease.
URL:http://pkunews.org/
19.Progeria Research Foundation, Inc.
Medical research, education, support, and fundraising for this "pre-mature aging" disease.
URL:http://progeriaresearch.org
20.Nomid /Cinca
Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site maintained by patients, parents and friends for their counterparts worldwide. Email support group at eGroups.
URL:http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm
|
