Finding useful health information on the Internet can be difficult, but we’re here to help. This page gathers quality information from trusted sources. You can learn more about the disease, visit handpicked websites, and find resources to help you in your daily life. Need more information? Click the menu on the left to find more!
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Medical Disclaimer
The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
Hallermann-Streiff Syndrome
Overview
Hallermann-Streiff syndrome is a rare, congenital condition characterized mainly by abnormalities of the skull and facial bones; characteristic facial features; sparse hair; eye abnormalities; dental defects; degenerative skin changes; and proportionate short stature. Intellectual disability is present in some individuals. Almost all reported cases of the condition appear to have occurred randomly for unknown reasons (sporadically) and are thought to have resulted from a new mutation in the affected individual. Treatment is symptomatic and supportive. Source: Genetic and Rare Diseases Information Center (GARD), supported by ORDR-NCATS and NHGRI.
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
FSHD Basics
A brief overview of the disease.
Mal de Debarquement Foundation Blog
Read experiences of those living with Mal de Debarquement Syndrome in the blog. If you would like to add your experience please send it to connect@mddsfoundation for vetting and review.
Disability & Sexuality Webinar Series
Sexual health is an important but overwhelming and confusing part of growing up. This 4-part series of videos has accompanying PDFs, suggested accompanying books, and synopses of the 4 full webinars.
Cure CMD's YouTube Channel
Hundreds of hours of educational webinars about CMD
Grant Program Explanation
Grant Program Information for Clinical Research