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Community
- Living With an Illness |
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National Alliance for
Children with Life-Threatening Conditions
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NACWLTC is a coalition of organizations and individual
leaders dedicated to improving palliative, end of life and bereavement
services for children with life-threatening conditions and the loved ones
who care for them. |
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LastChapters
- Stories about living with dying
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LastChapters is founded on the belief that when we're
feeling isolated, desperate, or simply curious about our situation, we
benefit profoundly from the lessons learned by others. They can console
us. They can offer us ways to heal ourselves. They can teach us how to
live with dying. Recently opened March, 2003 |
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GrowthHouse
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Helping children, families, and professionals with
illness, grief, and many other issues in end-of-life care. This page
contains links to a wonderful variety of resources, including pieces
written by parents and teens. |
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Brave
Kids
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Brave Kids is a non-profit organization that
serves the needs of children with chronic and
life threatening illnesses by harnessing the power of the Internet.
By creating a unique Internet community, www.bravekids.org fills a
large void for seriously-ill children and their families by providing a comprehensive directory of healthcare specialists,
relevant medical information from healthcare
professionals, a community chat room, interactive
contests and an online store for children with special needs. Brave Kids
also provides computers to seriously ill children from low-income families through
its corporate donation program.
Thorough & absolutely wonderful.
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Kidneeds
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Kidneeds is a worldwide resource that provides
children with special needs, families and other caregivers with access to
comprehensive information. Subscribers and guests can find professional
opinions on important topics, learn about public health policy and advocacy
efforts, link to programs and services, communicate through message boards
and chat opportunities, connect with other caring families and friends, and
purchase a wide range of products specifically tailored for children with
special needs in one simple to shop place. Thorough & absolutely wonderful.
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Band-Aids
& Blackboards
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When
Chronic Illness...or Some Other Medical Problem...Goes to School. This is a
site about growing up with medical problems...any ole type. Its goal is to
help people understand what it's like, from the perspective of the children
and teens who are doing just that. These kids have become experts at coping
with problems that most of you have never heard of. They'd like you to know
how they do it, and they hope that you'll be glad you came to visit. I've
divided the contents into three ponds; one for kids, one for teens, and one
for adults. Figure out which you are, and jump in.
Another wonderful
site.
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Supportive
Care of the Dying
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Every day
human beings move in smaller and larger ways towards the day of their death.
Health care organizations, physicians, nurses, clergy and social service
providers are continually seeking ways to improve end-of-life care. At
Supportive Care of the Dying: A Coalition for Compassionate Care, so are we.
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The
Missoula Demonstration Project
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Begun
in 1996, this project has combined community-based action with extensive
research on living with life-limiting illness, death, dying, caregiving, and
grief in Missoula County, Montana. They have achieved excellent results, and
serve as a model for others. Available also are effective pain scale and
advance directives tools.
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Hopes
and tears Hometown
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This is a virtual community
where families of children with life-threatening illnesses can come together
for support and information, regardless of race, religion, lifestyle, or
ability to pay. |
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| Accordant.com
| This site offers communities
providing support for those with chronic disorders such as CIDP, hemophilia,
multiple sclerosis, Gaucher's disease, etc. |
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