LYMHPEDEMA ADVOCACY INFORMATION

Lymphedema Advocacy Information

This page has been updated and included in our new page, for current information please see:

Lymphedema Advocacy

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_advocacy

There has been much discussion regarding advocacy for lymphedema patients in our online support groups. The group that has been at the forefront of patient advocacy thus far is the National lymphdema Network. However, what is needed is not only support for their activities, put a world wide "grass-roots" effort.

This could also include advocacy online to the various levels of government that enact rules, laws and regulations regarding healthcare management, insurance laws, research funding and available treatments.

There are also some of us involved in this website and online groups that are presently discussing the very establishment of a Lymphedema Advocacy organization involving Lymphedema People. Called Lymphedema Advocates International, I invision a broad based coalition reaching around the world empowering lymphedema patients.

Below are organizations involved in advocacy and a few excellent articles regard advocacy and lymphedema.

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Lighthouse Lymphedema Network

Advocating for legislation in Georgia

http://lighthouselymphedema.org/

2012 Lymphedema Education Day at the Georgia State Capital ) Legislation Day

Legislative Day at the Georgia State Capitol, Friday, January 27, 2012, 8:00am-4:00pm. The goal of this day is to educate the legislators about lymphedema. Through PowerPoint, handouts, brochures and one on one with various representatives, the hope is to eventually pass a state lymphedema bill to guarantee coverage for garments, devices, and future treatment options for all patients.
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National Lymphedema Network

http://www.lymphnet.org/

Article *originally on the NLN website*

The Role of Professional Responsibility and Advocacy in Developing Access to Rehabilitation Service For Unmet Needs: A Case Study of Lymphedema Services in Vermont.

Lee Nelson, P.T., M.S., D.P.T.

http://spahp.creighton.edu/otptethics/Papers/PDFpaperfiles/Ethics%20paper.%20Lee%20Nelson.pdf

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Special Kudos and thanks to the National Lymphedema Network

Virginia: Statewide Legislation Addressing Lymphedema Treatment Passes

http://www.lymphnet.org/lymphedemaFAQs/legislation/actionAlert/virginiaPasses.htm

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National Lymphedema Network

Research Roundup - Conference

https://www.lymphnet.org/2012reg.htm

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IN CANADA

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Lymphovenous Canada

http://www.lymphovenous-canada.ca/

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The Lymphedema Association of Quebec - InfoLympho

http://www.infolympho.ca/en/index.en.htm

Proposal for a multidisciplinary
Lymphedema services at the MUHC: A pilot project

"McGill Lymphedema Research Program"

http://www.infolympho.ca/en/muhcProject.htm

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IN AUSTRALIA

Lymphoedema Association of Australia

http://www.lymphoedema.org.au/index.htm

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*** For a complete resource guide and directory on advocacy
see the category Lymphedema Advocates International ***

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For information about Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema\

For Information about Lymphedema Complications

http://www.lymphedemapeople.com/wiki/doku.php?id=complications_of_lymphedema

For Lymphedema Personal Stories

http://www.lymphedemapeople.com/phpBB2/viewforum.php?f=3

For information about How to Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound

For information about Lymphedema Treatment

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment

For information about Exercises for Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema

For information on Infections Associated with Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema

For information on Lymphedema in Children

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

Lymphedema Glossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

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Lymphedema People - Support Groups

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Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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Lipedema Lipodema Lipoedema

No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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MEN WITH LYMPHEDEMA

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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All About Lymphangiectasia

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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Lymphatic Disorders Support Group @ Yahoo Groups

While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.

DISCRIPTION

Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.

http://health.groups.yahoo.com/group/lymphaticdisorders/

Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

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Lymphedema People New Wiki Pages

Have you seen our new “Wiki” pages yet? Listed below are just a sample of the more than 140 pages now listed in our Wiki section. We are also working on hundred more. Come and take a stroll!

Lymphedema Glossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema

Arm Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=arm_lymphedema

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema

Acute Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=acute_lymphedema

The Lymphedema Diet

http://www.lymphedemapeople.com/wiki/doku.php?id=the_lymphedema_diet