Alternative and Innovative Therapies for Children with
Autism -
Description: A
comprehensive review of the research on alternative and new treatments for
children with autism and other neurological disorders; includes an online
forum.
Contact:
Peter Shefler
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Apraxia-Kids -
Description: A site
devoted to developmental apraxia of speech, a childhood motor speech disorder.
Includes FAQs and articles by communication disorders professionals and parents
regarding assessment and treatment for developmental apraxia of speech.
Contact: Sharon
Gretz
Feedback: None received yet; you may be the
first! New sites: We welcome your suggestions
The
A-T Children's Project -
Description: Information and resources concerning
Ataxia-Telangiectasia, an inherited childhood disease.
Contact:
bradmargus @delphi.com
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Attention Deficit Disorder
-
Description: An index
of Internet resources on Attention Deficit Disorder (ADD) and Attention Deficit
Hyperactivity Disorder (ADHD).
Contact: Kurt Schwehr
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Children with DIABETES (TM) -
Description: An "on-line magazine for kids and families with
juvenile diabetes."
Contact:
Administrator
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Congenital
Heart Disease Information and Resources (Children's Health Information
Network) -
Description: "Our
goal is to provide information and resources to families of children with
congenital and acquired heart disease, adults with CHD, and the professionals
who work with them."
Contact:
Mona Barmash
Feedback:
None received yet; you may be the first! New sites: We welcome your suggestions
Convomania -
Description: "Convomania is an online community, sponsored by
the Worldwide Disability Solutions Group at
Apple Computer for children
who are seriously ill or disabled. It's a place where kids are talking openly
and honestly about what it means to live with a disability and to battle a
chronic illness. Convomania is for kids who are sick and tired of being sick
and tired."
Contact: mania@apple.com
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Diabetes Insipidus Foundation -
Description: Provides
information in English and French on all forms of diabetes insipidus:
neurogenic, nephrogenic, dipsogenic and gestagenic. Provides articles, FAQs,
stories, brochures, chat room, message board, etc.
Contact:
Linda Rowley
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
FamilyVillage -
 Description: "We are a
global community that integrates information, resources, and communication
opportunities on the Internet for persons with mental retardation and other
disabilities, for their families, and for those that provide them services and
support."
Contact:
MoreInfo@ChildHealthInfo.com
Feedback: None received yet; you may be the
first! New sites: We welcome your suggestions
Family Voices -
 Description: "Family
Voices is a national, grassroots clearinghouse for information and education
concerning the health care of children with special health needs. We stay on
top of public and private sector health care changes that affect our children
and families through the collective efforts of our families: a volunteer
Coordinator in every state; 10 Regional Coordinators; and a small staff working
in several locations around the country."
Contact:
Linda Rowley
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Hemi-Kids -
Description:
Hemi-Kids website and e-mail list provides information and support for
parents of children with hemiplegia, hemipareis, and pediatric stroke. The web
site features weekly question and answer forums with pediatric neurologists,
physical, occupational, and speech therapists. It also features helpful hints
for children, how to deal with questions about your child, coping, as well as
numerous links to other sites of interest. There is a mirror site in
Spanish.
Contact: Nancy Atwood
Feedback:
None received yet; you may be the first! New sites: We welcome your suggestions
Lyme
Disease Information Resource -
Description: A
comprehensive collection of information on Lyme Disease.
Contact:
Donna Herrell
Feedback:None yet; yours may be the first! New sites: We welcome your suggestions
Make-A-Wish
Foundation® of America -
 Description: This organization works
"to ensure that wishes are granted to children in the United States with
life-threatening medical conditions creating the probability the children will
not survive beyond their 18th year." Includes a directory of state
chapters.
Contact: Make-A-Wish National Office
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
National
Pediatric AIDS Network -
Description:
Pediatric/adolescent HIV/AIDS site, with over 400 links to info
covering preconceptual issues through adolescents. News and articles
forthcoming.
Contact: gary@npan.org
Feedback:
None received yet; you may be the first! New sites: We welcome your suggestions
OncoLink® Pediatric Oncology
(University of Pennsylvania) -
 Description: Pediatric cancer information for
physicians and families.
Contact:
Editors
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Organizations Serving Specific Disabilities and
Conditions -
Description: This
"hospital without walls" offers, among other things, multimedia tutorials for
parents and health professionals.
Contact:
Administrator
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Our
Kids -
 Description: For parents and caregivers who are
working with children with physical and/or mental disabilities. Offers an
assortment of links, resources and writings.
Contact:
Randy Ryan
Feedback:None received yet; you may be the first! New sites: We welcome your suggestions
Pediatric Brain Tumor Patient Resource
Handbook -
Description: A
complete reference guide to pediatric brain tumors, developed by the
Brain Tumor Foundation of Canada.
Also available via OncoLink®.
Contact:
Editors
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Pediatric HIV/AIDS Links -
Description: A
directory of links to various pediatric AIDS articles and Web sites
Contact: Jason
Stoller
Feedback: None received yet; you may be the
first! New sites: We welcome your suggestions
Pediatric Neurosurgery Home Page -
Description:
"...Dedicated to providing families with information regarding various
aspects in the field of pediatric neurosurgery."
Contact:
Neil Feldstein, MD
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
The Prader-Willi Foundation -
Description:
Information and resources relating to Prader-Willi Syndrome, a genetic
disorder.
Contact: PWSyndrome @aol.com
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Shriners Hospitals -
 Description:
Shriners Hospitals offer free care to children with burns and
treatable orthopedic conditions. This site provides general information and a
directory of hospitals.
Contact:
1-800-237-5055
Feedback:None yet; yours
may be the first! New sites: We welcome your suggestions
Special Needs Education Network -
Description: A large,
searchable index of Internet resources addressing a variety of childhood and
young adult special needs.
Contact:
User
Feedback
Feedback: None received yet; you may be the
first! New sites: We welcome your suggestions
Starbright Pediatric Foundation -
Description: The
Starbright Foundation is a philanthropic organization dedicated to making "a
real and meaningful difference in the lives of seriously ill children and their
families."
Contact: Mail
Gateway
Feedback: None received yet; you may be the
first! New sites: We welcome your suggestions
Sudden Infant Death Syndrome (SIDS) Network
-
 Description: Documents and links
dealing with nearly every major aspect of SIDS, plus an E-mail mailing list.
Point Top 5% site, Whole Internet Catalog "Select" and
Internet Audit Bureau "Big Hit."
Contact:
Chuck Mihalko
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
U.S.
Cerebral Palsy Athletic Association -
Description: "Our
overall purpose is designed to provide both individualized sports training and
competitive opportunities for atheletes with cerebral palsy, or other related
challenges, such as head injuries or strokes."
Contact:
Jim Patterson
Feedback: None received yet; you may be the first! New sites: We welcome your suggestions
Your Child and Neurosurgery -
 Description: ""An
information service for families with children having neurosurgical illnesses."
Includes detailed information on a variety of neurological conditions, and a
question-and-answer service.
Contact:
Guest Book
Feedback: None received
yet; you may be the first! New sites: We welcome your suggestions
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