Medical References
General Sites & Non-Profit Organizations
Birth
Defect Research
for Children
Organization
provides comprehensive
fact sheets
about birth
defects, parent-to-parent
matching opportunities
and information
resources.
Maintains
the National
Birth Defect
Registry.
Center
for Disability
Information
& Referral
(CeDIR)
Information
about a wide
variety of
disability-related
needs through
print and
video resources;
bibliographies
on topics
such as “Personal
Futures Planning
for People
with Disabilities,”
“Siblings
of People
with Disabilities,”
“Transition
from School
to Adult Living,”
and more.
Children’s
Hospital of
Pittsburgh of UPMC's
Child Health
Library
Provides information
about childhood
injuries,
diseases,
developmental
issues and
treatment
options with
links to additional
related online
resources.
Children
with Disabilities
Web site offers
families,
service providers,
and other
interested
individuals
information
about advocacy,
education,
employment,
health, housing,
recreation,
technical
assistance,
and transportation
covering a
broad array
of developmental,
physical,
and emotional
disabilities.
Features national
calendar of
events, children's
page, as well
as national,
state, and
local resources.
Consumer
Health for
Kids
A list of
excellent
Web-based
consumer information
sites (general
in nature)
focusing on
health and
wellness topics
related to
children and
teens; presented
by the National
Network of
Libraries
of Medicine
(NN/LM).
Disabled
Sports USA
Information
about DS/USA
events and
its nationwide
sports rehabilitation
programs open
to anyone
with a permanent
physical disability.
Activities
include winter
skiing, water
sports, summer
and winter
competitions,
fitness and
special sports
events. Participants
include those
with visual
impairments,
amputations,
spinal cord
injury, dwarfism,
multiple sclerosis,
head injury,
cerebral palsy,
and other
neuromuscular
and orthopedic
conditions.
Easter
Seals National
Headquarters
Provides services
(including
medical rehabilitation,
job training
and employment,
inclusive
child care,
adult day
services,
and recreation)
to help children
and adults
with disabilities
gain greater
independence;
400 centers
nationwide.
Family
Friendly Fun
& Special
Needs Resources
Information
to enhance
the quality
and enjoyment
of family
life with
special needs
children.
This is a
good example
of many family-oriented
sites which
are maintained
in specialized
web-rings
by the parents
of special
needs children.
Most offer
personal stories
about their
child’s
illness, plus
links of interest
– these
links can
be particularly
helpful to
the parents
of children
with similar
diseases/disabilities.
This site
belongs to
more than
twenty disability-related
web-rings
which can
be accessed
directly at:
http://www.family-friendly-fun.com.
Family
Village
Family Village
is a comprehensive
online community
which integrates
information,
resources,
and communication
opportunities
for people
with cognitive
and other
disabilities,
for their
families,
and for those
who provide
them with
services and
support. The
library includes
information
about general
diagnoses
as well as
hundreds of
specific conditions
and diseases.
Users can
click on a
diagnosis
to access
the following
information:
- Who to Contact
- Where to Go to Chat with Others
- Learn More About It
- Web Sites of Interest (In some cases, non-English sites are listed also)
Top
The
Fathers Network
Support and
information
(available
in English
and Spanish)
of interest
to fathers
raising children
with special
health care
needs and
developmental
disabilities.
iCan!
A one-stop
online resource
for information,
guidance,
conversation
and community-building
for those
affected by
disabilities.
Site features
extensive,
relevant content,
well-organized
and easy to
navigate.
Internet
Resources
for Special
Children (IRSC)
Information
for parents,
family members,
caregivers,
friends, educators,
and medical
professionals
relating to
the needs
of children
with disABILITIES.
Links to facts
about specific
disorders,
products,
legal, educational
and daily
living issues,
support groups
and additional
resources.
KidsHealth
Well-organized,
easy-to-use
site features
a wide range
of health
and wellness
information
for parents,
teens and
kids. Some
helpful topics
include: dealing
with feelings,
kids'
health problems,
financial
management
during a medical
crisis, caring
for a child
dependent
on medical
technology,
preparing
a child for
a hospital
visit/surgery,
as well as
a look at
basic medical
tests/exams.
KidSource
Online
Easy-to-navigate
site features
broad range
of parent-oriented
information
about health
and education
issues.
March
of Dime Birth
Defects Foundation
National organization
seeks to reduce
infant mortality
and the incidence
of birth defects.
Web site features
downloadable,
easy-to-understand
fact sheets
about specific
birth defects;
also access
to its Resource
Center, a
toll-free
service providing
information
and referral
help from
trained professionals
concerning:
birth defects,
pregnancy,
genetics,
newborn care,
etc.
NOAH:
New York Online
Access to
Health
Unique collection
of state,
local and
federal resources
selected with
consumers
in mind. Searchers
may select
from a list
of health
topics which
are then narrowed
to include
definitions,
care and treatment,
and lists
of information
resources.
Many bilingual
resources.
Our-Kids
Web site supporting
the Our-Kids
e-mail list,
a "family”
of more than
800 parents,
caregivers
and others
working with
children with
physical and/or
mental disabilities
and delays.
Our-Kids-Adults
Support and
information
for parents
and caregivers
of teens and
adults with
disabilities.
Parent
Education
Network (PEN)
Pennsylvania
coalition
of parents
of children
range of disabilities
and related
conditions.
PEN provides
information,
skills, and
support to
parents in
helping children
reach their
full potential
in educational,
vocational
and community
settings.
A wide range
of resources
are featured
with emphasis
on those located
in Pennsylvania.
Parenting
a Special
Needs Child
Offers a wide
variety of
information
concerning
all aspects
of parenting
a special
needs child.
More than
15 specific
conditions
are covered,
each featuring
a brief medical
synopsis,
organizations
to contact
and related
links of interest.
Part of the
Special Angels
Web Ring.
Parenting
Special Needs
Children
From About.com,
this parent-oriented
site is practical,
up-to-date
and easy to
use; coverage
includes a
wide range
of disease
and disability
issues, a
weekly newsletter
and message
board.
Parents
Helping Parents
Dedicated
to meeting
children's
special needs
through parents
helping parents.
Special features
include: baby
gift program,
mentor parenting,
support groups,
community
links and
calendars,
and an equipment
exchange of
adapted devices,
durable medical
equipment
and other
useful tools
to enrich
and/or enhance
life for children
with special
needs.
Pennsylvania’s
Initiative
on Assistive
Technology
(PIAT)
Pennsylvania's
statewide,
cross-age,
cross-disability
program, PIAT
seeks to improve
access to
assistive
technology
for all individuals
with disabilities;
operated through
Temple University's
Institute
on Disabilities.
Web site features
calendar of
training and
events, plus
access to
Pennsylvania's
Assistive
Technology
Lending Library
(a free service
that loans
assistive
technology
devices to
people with
disabilities)
and the Recycled
Equipment
Exchange Project
(REEP – a
classified
listing of
assistive
technology
to sell, buy,
or donate).
Special
Needs / Special
Kids
Disability-awareness
site for parents
and others
interested
in related
issues. Provides
easy-to-read
information
about specific
conditions,
educational
resources,
support and
a message
board.
