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We have collected internet sites that we feel
offer
reliable information. Many of the sites are provided by the EPEC
curriculum, and others come from our own experience. The Jason Program is not
responsible for the content of these sites, and it takes no formal position
regarding the information they present. As always, review information carefully,
and talk with your physician.
Maine
Resources
Last updated:
April 28, 2008
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Catholic Charities of Maine
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Since 1966, Catholic Charities Maine has dedicated itself to
creating, administering, and advocating for programs and services that reach
out and meet the critical human service needs of our state. |
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Hospice Volunteers of the
Waterville Area |
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Make-A-Wish Foundation of Maine
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We grant the wishes of children with life-threatening medical
conditions to enrich the human experience with hope, strength, and joy. Each
wish surrounds the child with magical moments and touches everyone involved.
We invite you to join in our ongoing story of wish families, volunteers, and
supporters as they make wishes come true. |
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Dreams for Maine Kids
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Dreams for Maine Kids is a non-profit organization that
fulfills wishes of children with life threatening illnesses in Maine. Dreams
for Maine Kids was founded in 2000 by a group of caring individuals with a
shared goal.
It is the commitment of Dreams for Maine Kids to facilitate dream wish
requests for Maine children, ages 5-15 years, with life-threatening
illnesses regardless of race, color, creed, religion and financial
constraints. |
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Starlight
Starbright Children’s Foundation of New England
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Starlight Starbright Children’s Foundation of New England is
a 501c3 non-profit organization dedicated to brightening the lives of
seriously ill and hospitalized children and their families through
innovative programs that empower, educate, entertain, and inspire.
By blending the worlds of entertainment, technology, and pediatrics,
Starlight Starbright provides programs and services that enable children and
their families to address the social, emotional, and medical aspects of
living with a serious illness. Starlight Starbright in-patient and
outpatient programs help reduce the stress, boredom, pain, anxiety, and
isolation felt by many ill children and their families.
Working with 60 local hospitals, Starlight Starbright’s New England chapter
brings smiles to over 100,000 children each year in the states of Maine, New
Hampshire, Vermont, Massachusetts and Rhode Island. Our programs are offered
free of charge to children, families, and healthcare professionals during
the course of an illness and during recovery.
With your support, we can ensure that, throughout the entire journey of
their illness, a seriously ill or chronically ill child experiences the joys
of childhood, too! |
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Starbright Services |
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AirLifeLine
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A national non-profit charitable organization of over 1,500 private
pilots who fly ambulatory
patients who cannot afford the cost of travel to
medical facilities for diagnosis and treatment. Our pilots donate their
time, aircraft and fuel to make this air transportation service totally free
of charge for patients who qualify.
A wonderful service provided by
wonderful people. |
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Maine
Hospice Council
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The Maine Hospice Council
exists to ensure the continued development of Hospice and Palliative Care in
Maine. The Council provides education and technical assistance regarding
end-of-life care, as well as advocacy for terminally ill and bereaved
persons regarding quality-of-life care, as well as advocacy for terminally
ill and bereaved persons regarding quality-of-life issues throughout the
state. |
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Maine Pain
Initiative |
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Maine Council of Churches
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The Maine Council of Churches is many things: a forum for
faith issues, an organization with a membership of more than 600 churches in
Maine, a united voice calling attention to social issues of concern, such as
hunger, poverty, civil rights, economic justice, environmental stewardship,
criminal justice and much more.
Their mission statement clearly defines the organization: "We engage diverse
faith communities and the wider society, in dialog and actions leading to
justice and reconciliation. Our united voice fosters a compassionate society
through discernment, education, and advocacy."
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Connections
- A support group for people with chronic pain
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Grief
and Renewal
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The
process of bereavement leads us on a path to greater understanding and
acceptance of the cycle of life and death. From this understanding and
greater caring the bereaved are able to bring a new perspective into
their lives and a new gift into their worlds. Through this process they
renew themselves and their communities, while preserving the meaning of
the life of the person they have lost.
Inspired by Laura Slap-Shelton, Psy.D, this site fosters the efforts of
the bereaved to give their loss meaning by making a contribution or gift
of their experience.
The Jason Program is honored to share a
common purpose with this group. |
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General Information
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Agency for Healthcare Research and Quality
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This is an an online resource that allows users to learn,
share, and adopt innovations in the delivery of health services |
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Tips for savvy medical Web surfing
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Partnership for Parents
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A Support Network for Parents of Children with
Serious Illnesses
No matter where you are in this journey, you share something with every
other parent of a child with a serious illness - we find ourselves
pacing the floor in the middle of the night, worrying and wondering. We
want to do everything we can to ease our child’s pain and help them live
fully. Lack of sleep, money worries, work pressures, the needs of our
other children, our spouses and our relatives—everything has an effect
on our ability to cope.
Other parents just like you have done it and are doing it right now.
This site is created for you by those parents. We understand what you
are going through because we have been there ourselves. We have insights
and experience to share and knowledge that you won’t readily find
anywhere else.
We want this site to be a haven (albeit an electronic one) where you can
feel the solace of kindred spirits while finding the information you
need to cope with your situation and navigate this difficult journey. |
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Community
- Living With an Illness
Clinical Trials
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Acurian
A site that allows you to search for clinical trials
in many areas, with an option to receive e-mail notification of new
trials. A free registration is required.
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Cancer.gov
A section of the NCI, this site offers access to clinical
trials in oncology. |
Complimentary Care
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National Center for Complimentary and
Alternative Medicine |
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WholeHealthMD.com
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is dedicated to providing the best in complementary and
alternative medicine. All of our information is developed by a team of
leading board- certified doctors and specialists. |
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Healing
People This site offers a large amount of searchable
information, including an ability to look for practitioners in your
area. |
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Dr. Weil A
well-trained physician, Dr. Andrew Weil gives a thorough, careful assessment
of many non-traditional interventions. He will reject those he feels have no
value or may be harmful. |
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The Sound
Covenant Foundation
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Sound Covenant encourages and empowers people to visit
those who are sick or near end of life with music that comforts and
promotes healing. Volunteers in hospices, hospitals, churches and
nursing homes are trained to use therapeutic recorded and live music
to relieve pain and suffering. Donations and profits from the sales of
products are used to bring specially trained, music practitioners to
the bedside in hospices and nursing homes.
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Communication & Social Awareness
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POLST.org
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Our goal is to effectively communicate the wishes of
seriously ill patients to have or to limit medical treatment as they
move from one care setting to another.
POLST Paradigm forms are now available in many states and may have a
different name. We use the term POLST Paradigm to describe these
programs in general.
A sample of most website materials are available at no cost to help
facilitate development of other POLST Paradigm programs. There may be a
low cost for larger orders to help cover expenses of a state or regional
program's coordinating center. |
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Spencer Crawford Children's Foundation
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Spencer Crawford Children's Foundation, Inc.'s services
are tailored to meet the needs of each individual family and child.
Just as no two people are alike, no two illnesses or family situations
are the same. Some families may need limited assistance for a short
period of time while other families need additional assistance for a
longer period of time. Our services are free to those families caring
for a child diagnosed with a life threatening illness. We rely solely
on corporate, private and public donations to fund our services. |
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Caring Bridge
| A portal designed to help patients and their
families connect through the Internet or even create their own blogs.
Other connecting sites for teens and young adult cancer patients:
www.teenswithcancer.org
and
www.planetcancer.org |
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Social Medicine
Portal
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All medicine by its very nature is
social. The way we define diseases and health, the methods we use for
diagnosis and treatment, how we finance health care, all these cannot help but
reflect the social environment in which medicine operates. |
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Conversations in Care
| Conversations in
Care™, is a resource center for the improvement of healthcare
through better physician/patient communications. This site allows you to
explore the many challenges surrounding physician and patient communications
in the field of oncology, and look at ways to build effective partnerships in
care. Conversations in Care™ will continue to develop over time. It begins by
examining the issues most faced by physicians. |
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Ethics
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Midwest
Bioethics Center People at this
center are devoted to increasing communication about end-of-life care
issues. Much of the details pertains to adults, but all of the philosophy
pertains to adults and children alike. Lots of compassion. |
Fibromyalgia
General
Pediatric Issues
Palliative
Care & Hospice
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End-of-Life Care
for Children |
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GetPalliativeCare.org |
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The
National Hospice and Palliative Care Organization
The National
Hospice and Palliative Care Organization is the largest nonprofit membership
organization representing hospice and palliative care programs and
professionals in the United States. The
organization is committed to improving end of life care and expanding access
to hospice care with the goal of profoundly enhancing quality of life for
people dying in America and their loved ones
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The National Palliative Care Research
Center |
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HospiceDirectory.org
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Hospice locator service that covers all of North America and U.S.
territories |
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ACT - Promoting Palliative
Care for Children |
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Coda
Alliance - How to Talk About End of Life While Promoting Hope |
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Dying Well
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Resources for people facing life-limiting illness, their
families, and their professional caregivers Dr. Ira Byock, long time
palliative care physician and advocate for improved end-of-life care,
and a past president of the American Academy of Hospice and Palliative
Medicine, provides written resources and referrals to organizations, web
sites and books to empower persons with life threatening illness and
their families to live fully. |
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Yahoo!
Palliative Care Links |
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Children's Project on Palliative/Hospice Services (ChiPPS)
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The Children's Project on Palliative/Hospice Services is
working to concretely enhance the science and practice of pediatric
hospice and palliative care, and to increase the availability of state
of the art services to families. |
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The American Hospital Association's "Put It In Writing" Web site
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This site contains resources to help
people put their wishes about end-of-life care into advance directives |
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Caring Connections
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Launched in late March, the
Web site's focus is "Public awareness of advance care planning,
hospice and other
end-of-life topics has increased dramatically over the past months and
people are eager to learn more about
how to ensure their wishes are honored." Free state-specific advance
directives are downloadable. |
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Medscape Palliative Care Resource Center
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This Resource Center offers a collection of the latest
clinical information on end-of-life care for adults and children, as well as
information on supporting caregivers. Login at this link, and you will be
directed to the Palliative Care home page. A link to the pediatric section
is available on the left side of the page. |
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What Families and Patients Should Know About Palliative Care |
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DignityResources
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DignityResources.com has been created to help people
understand the assets and financial options available to them during a
serious or life threatening illness and
assist them in making the most informed choices possible given their
particular situation, assets, and needs. |
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The 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.
Pediatric articles are available here. |
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Rallying Points
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Rallying Points assists community-based
coalitions in improving care and caring for those nearing the end of
life. Rallying Points encourages coalitions to identify community needs
for better care near the end of life, advocate for health system changes
to bring about better care and develop specific projects that support
dying people and their families. |
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Americans for
Better Care of the Dying "is a non-profit public
charity dedicated to social, professional, and policy reform aimed to
improve the care system for patients with serious illness, and their
families." |
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On
Our Own Terms Based on two years of research by
Bill and Judith Davidson Moyers this site will reveal the stories of the
dying, their families, and their caregivers, and illustrate the growing
struggle to balance medical intervention with comfort and humanity.
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Completing a Life |
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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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The
Initiative for Pediatric Palliative Care
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Children with life-threatening conditions face many
hurdles. So do their families. The Initiative for Pediatric Palliative
Care (IPPC - pronounced "ipsee"), represents a consortium of
organizations joining forces to improve the care and the quality of life
of these children and their families. |
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Palliative Care: One
Vision, One Voice - A Site for Nurses
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Here nurses may share information with other
professionals about initiatives related to improving patient care at the
end of life. With "One Vision, One Voice" nurses have the power to
transform palliative care rendered to patients worldwide. |
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| Promoting
Excellence Sponsored by the Robert Wood Johnson
Foundation, the mission of this site is obvious from the title - to promote
excellence in all aspects of palliative care. The site was redesigned and
updated in January, 2002.
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| American
Academy of Hospice and Palliative Medicine This
organization states that it is "the only
organization in the United States for physicians dedicated to the
advancement of hospice/palliative medicine, its practice, research and
education".
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Center
to Advance Palliative Care In its effort to extend the
high-quality end-of-life care initiated by the hospice movement to
hospitalized patients, CAPC works strategically with other national
programs, such as EPEC (Education for Physicians on End-of-Life Care) and
Last Acts, an initiative designed to improve care and caring near the end of
life. |
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Children's
Hospice International An established organization with
whom we share goals and philosophies. |
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International
Association for Hospice and Palliative Care Our
mission is to increase the availability and access to high quality hospice
and palliative care for patients and families throughout the world. We do
this by promoting communication, facilitating and providing education, and
by becoming an information resource for patients, professionals, health care
providers and policy makers around the world. |
Pain Management
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Pain in infants,
children, and adolescents: Resources for parents and professionals |
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Website:
Science Daily Pain Control News |
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Pediatric Pain
- Science Helping Children |
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Alliance of State Pain
Initiatives
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Welcome to the Alliance of State Pain Initiatives,
formerly known as the American Alliance of Cancer Pain Initiatives.
We recently changed our name to reflect the fact that most State
Pain Initiatives have expanded their focus to improving the
management of cancer and all types of pain. Addressing the
undertreatment of cancer pain will remain a major focus of the
Alliance of State Pain Initiatives. |
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PainEDU.org - News and
Resources |
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Healing Chronic
Pain
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New Integrative Pain Medicine website from Dept. of Pain
Medicine and Palliative Care Beth Israel Medical Center, New York. The site
presents the best of modern and traditional medicine in holistic chronic
pain treatment. Bibliographic references
provided. A multimedia, interactive feature of the website is its guided
imagery or relaxation exercise presented in Macromedia Flash. |
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The Suffering Child
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The Suffering Child is a "new, exclusively on-line
international and multidisciplinary Journal. It will be unique because
its aims are to explore all aspects of nociception, to combat the
prejudice that still conditions doctors when faced with a situation of
pain (especially in newborn and pre-term babies) and to formulate
guidelines for acute and chronic pain." Fabrizia Zingales,
Editor |
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Boston Medical Center's PainFree Pediatrics Program |
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PainAid
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This free
service is an online forum for people living with pain, and their
caregivers. It is staffed almost entirely by highly qualified
volunteers with a range of backgrounds, all of whom either live with
chronic pain or care for people who do. |
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Pain and the Law
Developed by St. Louis University and the American Society
for Law, Medicine, and Ethics under a grant from the Mayday Fund, this site
provides a wealth of information for professionals and patients regarding pain
control, including legal and ethical issues. |
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Pain.com
"A World of Information on Pain" is the motto of
this wonderful site. Designed for both professionals and consumers, there is
truly a wealth of information here. Yow will also find support groups,
personal stories, and free CME/CE offerings. |
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American Pain
Foundation's New Web Site (May 2005) The American Pain
Foundation is a nonprofit information resource and patient advocacy
organization serving people with pain. Our mission is to improve the quality
of life of people with pain by providing practical information for patients,
raising public awareness and understanding of pain, and advocating against
barriers to effective treatment. We represent exclusively the interests of
people who suffer from pain and we fill the need for a grassroots,
consumer-driven, patient-focused organization promoting better pain
management. |
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Pain,
Pain, Go Away: Helping Children With Pain A
nice review for parents and children from
the Izaak Walton Killam Children's Hospital and Dalhousie University,
Halifax, Nova Scotia, Canada |
| The American Academy of Pain Management
Another complete site, with areas designed
specifically for pain patients or medical professionals.
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National Pain Education Council (NPEC)
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Investigate the tools, services, and CME/CE programs
that the National Pain Education Council (NPEC) offers via this
multi-media website. Practitioners interested in advancing their
knowledge in the management of pain will find assessment tools they can
download and use in their daily practice, gain free access to recent
abstracts from key articles on pain management from the national library
of medicine, and multi-media, interactive CME/CE programs that include
case-based learning systems. |
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Basilar Artery Migraine This site, created by an individual without a connection to any
recognized medical institution, offers in-depth information for the
layperson about BAM, a relatively rare but disabling form of migraine.
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Chronic Pain
Clearinghouse The challenge for patients is finding the
right combination of treatment options and integrating them into daily life.
Living well with chronic pain requires commitment, patience and extreme
strength of spirit. However, most chronic pain can be managed to allow
patients to live a fulfilling life. If chronic pain is stealing your life, I
urge you to keep trying. I have lived with severe pain everyday for the past
twenty-three years and have never done better than I do today. There is hope.
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Note: There is an interesting section here titled
Eastern
Medicine vs. Western Medicine . Carefully read
this section : "If a patient can receive 40% reduction in pain with
medication, 25% reduction in pain with Chinese acupuncture, and 10% reduction
in pain with yoga or tai-chi, they have an overall improvement of 75%. I say
that sounds like good medicine!"
Pat Oreilly, 2002 --- While intuitively correct, this is not necessarily
an accurate statement. Two different treatments -- including those found in
western medicine -- do not always work well together. Please always consult
your physician for guidance.
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Chronic
Pain Resource Center
| A new online resource is available for pain
management professionals. The site provides access to interviews with
experienced pain management professionals, and allows the visitor to
download Power Point slide sets and images, as well as patient education
materials. It also features a calendar of pain conferences and events
and a shopping cart for ordering journal reprints.
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More Pain Management Links Here
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Spiritual Support
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The George Washington Institute
for Spirituality and Health
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The George Washington Institute for Spirituality and
Health (GWish) is a university-based organization, which is working
toward a more compassionate system of healthcare by restoring the heart
and humanity of medicine through research, education, and policy work
focused on bringing increased attention to the spiritual needs of
patients, families, and the healthcare professionals. |
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Wisdom
Ways
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The name "Wisdom Ways" reflects the proud heritage of the Sisters
of St.Joseph and the College of St. Catherine. It addresses the richness of
sacred myth, the wisdom of many ancient spiritual traditions and a reverent
attentiveness to the power and meaning of symbol.
Objectives are to: |
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create a network of resources for
spirituality in contemporary life and culture and serve as a
clearinghouse for individuals and groups seeking resources, suggested
speakers, specific programs, spiritual support |
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serve and enrich
theological education and spiritual opportunity through offering
programs, workshops, lectures, conferences and retreats on a wide
variety of topics |
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ECap
Online Dr. Bernie Siegel is a Yale-trained surgeon
who, through his patients, realized the healing power of love. He has
promoted his ideas for the last 15 years, and this site continues to spread
his beliefs. |
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Spirit
Site This site promotes itself as "A
spirituality library and resource site".
It has a comfortable style and a good deal of information and items for
sale. |
Teaching
& Research
|
Electronic
Resource Inventory
|
Members of the Central Group on Educational Affairs
(CGEA) of the AAMC have created a web site with links to resources of
interest to medical educators. The sites are organized into broad
topics. |
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