Resources- Specific Diagnosis Card Catalog- Lissencephaly (Agyria)
Related Disorders: Miller-Dieker Syndrome, Walder-Warburg Syndrome, Polymicrogyria, Schizencephaly, and Norman-Roberts Syndrome
Who to Contact
Lissencephaly Network, Inc.
10408 Bitterroot Court
Fort Wayne, Indiana, USA 46804
260-432-4310 (phone/fax)
E-mail: lissnet@lissencephaly.org
Web: www.lissencephaly.org
The Network's mission is to help relieve and possibly eliminate the deterioration of the family because of the extensive care children with this condition require. It offers parent support, updated and accurate medical information, genetic counseling, and equipment and toy sharing. It has local chapters including chapters in Canada and world wide. They have a directory available. The Network will provide assistance to individuals who wish to start a support group in their locality, and provides parent-to-parent matching through a database of families and children.
The Network publishes, The Lissencephaly Network Newsletter, three times a year which is included in membership. They also have brochures that contain information on genetic and medical studies, and offer a new parent packet that includes, seizure, feeding, and nutrition information for parents, membership registration and release forms. They have a bibliography of articles that are available to members for a minimal fee, a toy and equipment lending library, and are in the process of developing videos for distribution.
The Lissencephaly Network collects information on physicians and researchers who treat/study the condition and disseminate this information to its members. They provide referrals to other resources and provide information packets to those who request them.
Where to Go to Chat with Others
Lissencephaly
We are a group of parents who have experienced Lissencephaly. We are not doctors, any info obtained here
should be used only after conferring with your childs doctor. Lissencephaly is a group of disorders related
with abnormal neuronal migration during the gestational period.
Personal Accounts
Joey's Journey: Our Life With Lissencephaly
Learn More About It
About Lissencephaly
Lissencephaly Contact Group
The Genetics of Lissencephaly
From the Lissencephaly Network, Inc.
NINDS Lissencephaly Information Page
The National Institute of Neurological Disorders and Stroke
Lissencephaly
PEDBASE
Lissencephaly: Information for Parents
From the Lissencephaly Network, Inc.
Lissencephaly Syndrome Type III
From Online Mendelian Inheritance in Man (OMIM)
Miller-Dieker Lissencephaly Syndrome (MDLS)
From Online Mendelian Inheritance in Man (OMIM)
Norman-Roberts Lissencephaly Syndrome
From Online Mendelian Inheritance in Man (OMIM)
Links
Lissencephaly Contact Group - United Kingdom
My Journey with Jake
Links to other sites
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