The ACC Network -This organization provides information, resources, support, and peer
stories for children born with Agenesis of the Corpus Callosum (ACC).
You may contact them at (voice) 207-581-3119 or email them at firstname.lastname@example.org.
Syndrome Foundation -This
national website provides information, research, and education regarding
Angelman Syndrome. It offers help and support to families and friends
of people with this syndrome.
national site was developed by a Massachusetts physician to provide
answers to commonly asked questions.
Spectrum Disorders Publication- This page, from the California Developmental Disabilities Council,
is a great resource for parents, practitioners, and policy makers about
the evaluation and treatment of Autism Spectrum Disorders.
Injury Resource Center -This
site has lots of information about acquired and traumatic brain injury
and how it affects adults and children. Scroll down the page to see
the heading topics on the left side.
Information Center -The
information center includes: information about autism spectrum
disorders; activities of CDC and other federal agencies; state
activities funded by CDC; education, services, and research resources;
and activities to help children use the Internet to learn more
about autism spectrum disorders.
Information — One
of the most comprehensive sites on HIV/AIDS, it has links to discounted
prescription drugs, an "ask the experts" section, treatment
information for those who are newly diagnosed and those who have
been living with AIDS.
Services for the Autism and Asperger Syndrome -MAAP is a nonprofit organization that provides information and advice
to families of more advanced individuals with autism, Asperger's syndrome,
and pervasive developmental disorder (PDD).
Syndrome — This is a national website which defines Marfan's Syndrome and provides
resources on-line and in print. There is a contact for a Support Group
A Handbook for Families - This
is a large website with comprehensive information on diagnosis,
treatment, and information about schizophrenia.
Integration Resource Center -Based
at the University of Colorado Health Sciences Center, this site offers
information to improve the quality of life for children, adolescents
and adults with sensory integration dysfunction (DSI).
Brain Injury -This
site explains the symptoms and risk factors for brain injury that
is not a result of a trauma or head injury.
Academy of Allergy, Asthma and Immunology -A great resource for parents to learn about a variety of allergies and
The American Academy of Family Physicians sponsors this site.
You can search on a variety of topic areas: symptoms, conditions, diseases.
If you're not sure of a medical term, you can enter it into their "dictionary" to
find out what it means.
Home Reference -This is the National Institute of Health's website for consumer information
about genetic conditions and the genes responsible for those conditions.
You can search by disease or condition. There is also a glossary of definitions
of technical terms.
- Healthfinder - Healthfinder
has a searchable library with information on prevention, wellness, diseases,
conditions, alternative medicine, insurance, ratings
of organizations, online check-ups.
Mental Health Guide — The
Mental Health Guide is a comprehensive and concise guide
to mental health conditions and medical procedures.
and Child Health Library — This is a huge, searchable database in A-Z format.
Health Information — This
is not the most easy site to use. First click on the condition you
are interested in and then repeat this on the next page. You will
find descriptions of the conditions, treatment, and research. There
is a section that requires payment to access more information.
- Mental Health InfoSource — Intended for providers, this site may also be useful to consumers.
Go to the "A-Z Disorder Index" to find information on mental
Library of Medicine -This
site is a searchable database where you can access information on any
You Have A Diagnosis: What's Next?
-This guide can help you to find out more about your diagnosis and evaluate
information to make treatment decisions. Click on the links to the left
of the text to view more.
Office of Rare Diseases
-The Office of Rare Diseases (ORD) in the National Institutes
for Health provides information on more than 6000 rare diseases, including
current research, publications from scientific and medical journals,
completed research, ongoing studies, and patient support groups.
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