No current
listings for B.
Cerebral
Palsy
United
Cerebral Palsy – Cerebral Palsy Facts & Figures. Comprehensive
information about the history, causes, types and treatments for Cerebral
Palsy.
Cerebral Palsy Resource Center.
Great resource for cerebral palsy; contains link to the benefits of hippotherapy
(“treatment with the help of a horse.”)
Cockayne
Syndrome
Share
and Care Cockayne Syndrome Network, Inc. – Information pages. This
site contains information about what is Cockayne Syndrome, how it can be treated,
characteristic features and research about it.
National
Organization of Rare Disorders – Cockayne Syndrome page. This is
very basic information about Cockayne Syndrome. More information can be purchased
from NORD.
Cystic
Fibrosis
Cystic Fibrosis Foundation. This is a one-stop
resource for information about Cystic Fibrosis.
Cystic Fibrosis Information.
The site author is a woman who has CF. Information such as symptoms, statistics,
and history of CF are found.
The Cystic Fibrosis Center of Stanford.
The Education portion of this site provides all types of information about
CF.
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Down
Syndrome
Down Syndrome Information Network – About
Down Syndrome. This site contains a wealth of information about Down Syndrome.
The Key Facts about Down Syndrome is a very helpful section.
National Down Syndrome Society – Information
and Resources page. This is a “complete source for information about
DS.” Site contains developmental and health topics, new initiatives in
education, organizations and materials dealing with Down syndrome.
No current
listings for E.
Fetal
Alcohol Syndrome
FAS Community Resource Center.
Contains information about prevention, general facts, and FAS symptoms.
The ABCs of FAS/FAE.
Teacher’s guide and resource for FAS.
No current
listings for G.
Head
Injury (TBI or Traumatic Brain Injury)
Brain
Injury Association of America – What is Brain Injury. Great
resource for TBI. Contains fact sheet, statistics, and causes information.
Brain Injury Resource Center – Library. Contains glossary of TBI
terms, facts and map of brain.
No current
listings for I.
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Juvenile
Diabetes
Children
with Diabetes – Diabetes Basics. Extensive information about
diabetes.
Juvenile Diabetes Research Foundation International – Living
with Diabetes. The diabetes information pages include information about “daily
care and treatment, coping with emotional demands, helping delay the onset
of complications.”
No current
listings.
Legg-Perthes
POSNA Information
for Parents – Legg-Calvé-Perthes Disease. A somewhat
medical description of Legg-Perthes.
National
Osteonecrosis Foundation – Legg-Perthes Disease. Detailed informational
brochure.
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Microcephaly
National
Institute of Neurological Disorders and Stroke – Microcephaly
Information page. Contains information about what Microcephaly
is, if and how it can be treated, the prognosis, and the research.
Mosaic Syndrome
Mosaic Down Syndrome on
the Web – Frequently Asked Questions. Provides answers to basic questions
about Mosaic Syndrome.
National
Down Syndrome Society – Mosaic Down Syndrome page. Answers the question, “What
is Mosaicism?”
Moyamoya
Syndrome
Children’s Hemiplegia
and Stroke Association – Moyamoya page. Contains information
about what is Moyamoya, what treatment is available, and what research
is being conducted.
National
Institute of Neurological Disorders and Stroke – Moyamoya Information
page. Contains information about what Moyamoya is, if and how it can
be treated, the prognosis, and the research.
Multiple Sclerosis
Multiple Sclerosis Association of America – About
MS. Comprehensive information source for MS.
National Multiple
Sclerosis Society – About MS. Contains information about who gets
MS, what is MS, and how it is treated.
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No current
listings N or O.
Prader-Willi
Syndrome
Gene Reviews: Prader-Willi
Syndrome. Information about disease characteristics, diagnosis
and treatment.
Prader-Willi Syndrome
Association – The Syndrome. Contains basic facts, a glossary
of terms, and common questions about Prader-Willi.
No current listings for Q.
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Rett
Syndrome
International Rett Syndrome
Association. Comprehensive source for Rett Syndrome. Includes
an extensive page titled “what is Rett Syndrome.”
National
Institute of Neurological Disorders and Stroke – Rett Syndrome Information
page. Contains extensive information about Rett Syndrome. Answers many
FAQ.
Spina
Bifida
Children
with Spina Bifida – a resource page for parents. Contains
links for spina bifida organizations, treatment, and more.
National
Institute of Neurological Disorders and Stroke – Spina Bifida
Information page. Contains information about what Spina Bifida
is, if and how it can be treated, the prognosis, and the research.
National Information
Center for Children and Youth with Disabilities – Spina Bifida Fact Sheet.
Contains definition, incidence, characteristics, educational implications,
resources, and organizations related to Spina Bifida.
Spina Bifida Association
of America – Facts about Spina Bifida. Answers general questions
about Spina Bifida.
Spinal
Muscular Atrophy
Families of Spinal Muscular
Atrophy – Understanding Spinal Muscular Atrophy. Very detailed
source for SMA.
National
Information Center for Children and Youth with Disabilities – Spinal
Muscular Atrophy Fact Sheet. Contains information about what Spinal Muscular
Atrophy is, if and how it can be treated, the prognosis, and the research..
Stroke
American Stroke Association – About
Stroke. Contains information about what a stroke is, the impact and effects
of a stroke and risk factors for stroke.
Internet Stroke
Center – About Stroke. Contains information about types of strokes,
statistics, treatment, and living with stroke.
Sturge-Weber
Syndrome
Sturge-Weber Foundation – About
SWS. Comprehensive resource for questions about Sturge-Weber.
No current listings for T-Z.
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