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How to advocate to the media

The media and lymphedema 

It is so often said that we are our own advocates when it comes to lymphedema.  Indeed, every medical condition that has been successful in its media has done so by stepping forward and taking responsibility for fighting for our own rights, insurance coverages, government and medical recognition.

With lymphedema, it is even more true due to the overwhelming ignorance of nto only society, but the medical world.  To be successful, we must know what we are doing, how to do it , when to advocate and where we can advocate.  It is critical to be prepared, to be scientifically knowledgable about our condition, and to know how the media thinks.

II hope this page can provide information to help. 

Pat

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Media Advocacy

Media advocacy is the process of disseminating policy-related information through the communications media, especially where the aim is to effect action, a change of policy, or to alter the public's view of an issues. While a strict definition of "media" advocacy is limited to the strategic use of mass media in regard to a policy initiative, public health views the term more broadly. Almost identical techniques are often used to encourage people to change health behaviors as those directed towards changing policy; and media advocacy may be a single element of a specific campaign as well as an ongoing process. Media advocacy is practiced at all levels, from national to community based campaigns. The ultimate targets of most media advocacy are politicians and other decision makers.

Media advocacy activities may be proactive and initiated by public health workers, or they may be reactive. Reactive media advocacy involves taking action when required, especially when opponents of health policy actively seek to mislead, change the agenda, or divert attention to other issues.

Media advocacy may be used for an ongoing campaign, perhaps to ensure that the need for a new health screening service is kept on the political agenda. Similarly, a health organization may use media advocacy over a short period—to launch a campaign to increase the uptake of a new screening service, for example, or to publicize a new report on health inequalities.

An example of media advocacy with several different interim goals is an ongoing campaign against tobacco. Certain information is directed towards politicians and other opinion leaders whose support is needed for antitobacco measures, while different but related information is aimed at current or potential smokers. While the first is aimed at changing policy, the second seeks a behavior change. Both, however, share the overall goal of reducing tobacco-induced disease. In addition, an ongoing media advocacy program on tobacco will also involve monitoring the media for misleading information put out by those with vested interests in selling tobacco, and offering a prompt rebuttal.

Media advocacy is opportunistic. It exploits opportunities to use the media to convey information to large numbers of people, including special target groups. Those who work in media advocacy have a good understanding of the way the press and broadcasting organizations work; and they maintain good relationships with journalists, so as to be readily accessible to supply information and comment, and work with suitable experts who can give interviews and assist jounalists whenever necessary.

It is important to differentiate between media advocacy, an essential part of what is often termed "public information" work, and paid media campaigns, such as television spots or informational advertisements in newspapers, which are a common feature of "public education" programs. In contrast to the opportunistic and ongoing nature of media advocacy, paid media campaigns involve a more programmed delivery of education-oriented information, based on prior research, to specific target audiences. A public-education program may sometimes be supported by media advocacy, and vice-versa, but more often media advocacy is practiced on its own.

How Media Advocacy Works

Media advocacy for public health assumes that public health advocates and journalists have something to offer each other, that there is a convenient symbiosis between their professions. Those on the health side have potential stories, and they want to get coverage for them as part of a campaign to bring about change, and journalists want new stories to fill time or editorial (i.e., nonadvertising) space in their media. Journalists often rely on specialists to help them gather, analyze, and comment on the material they use, and sometimes to suggest stories in the first place. Public health advocates either are such specialists, or they can provide access to them. They also provide ideas for new stories, new angles on old topics, and substantive information to help the journalist to produce an article or story.

Furthermore, health is a popular topic. Most people have a personal interest in anything affecting what is, as many see it, their most cherished gift—their health. Public health leaders, therefore, by the very nature of their subject, have a head start when competing for the attention of journalists and for space in their media.

Anyone can do media advocacy—from an individual or members of a small, community-based health organization to the largest state or federal government health agency. Few tools are needed other than a telephone and, preferably, personal computing equipment. In larger organizations, a press and public affairs department will usually carry out much of the work, involving others as required. In a smaller organization the functions may be part of an information officer's duties, or, in a very small unit, they may be performed by one person, perhaps the chief executive.

Among the most common activities of media advocacy are the following:

To maximize the effectiveness of media advocacy, journalists should be treated with a certain priority; and everyone who can help with a story, such as the chief executive, key experts, and other contacts should observe this policy. It is easier to contact journalists than many other professionals—most are dependent on keeping in touch with their sources and other key contacts, so they tend to be readily accessible.

Where a coalition of health agencies and individuals is working in pursuit of the same goal, it is essential to coordinate activities and information. Disparities in facts and figures provided by different coalition partners may be seized upon by opponents of the policy being proposed, not only damaging the public credibility of those supporting the policy, but discouraging journalists from trusting, or even approaching them again in the future.

For most public health topics, special opportunities will arise for attracting the attention of journalists, and thus getting coverage. In particular, special occasions such as key meetings, publication dates of new statistics or reports, and other important dates (such as anniversaries) should be examined in advance to see whether they can serve as pegs on which news stories can be hung.

Among the pegs and material that can attract media coverage are:

Public health advocates can also make good use of physicians and other health professionals as experts to provide journalists with comments, information, and analysis. In the age of mass communications, with opinions constantly being heard from people described as "experts" on many topical issues, public cynicism may devalue what experts say, as few may be perceived as neutral. However, physicians and other health professionals tend to be perceived as primarily interested in people's health, especially when opposing those with obvious vested interests.

Medical and health publications offer special opportunities for coverage of public health stories. Apart from their potential subject interest, journalists on health publications will tend to have more relevant background knowledge and contacts than those in other media. In addition, some of these journals, especially the leading medical scientific publications, are themselves highly influential with the general media. Most health correspondents on newspapers and in broadcast media scan the leading medical journals, which often serve as the source or inspiration for their own stories.

Benefits of Media Advocacy in Public Health

There are many benefits of the creative and energetic use of media advocacy in public health. Many public health issues are closely integrated with other aspects of public policy, and therefore part of public debate. It is thus appropriate for public health leaders to inform the debate and ensure that appropriate issues are raised and that accurate information is published.

Among the advantages of media advocacy is that it can reach a wide audience, including key decision makers, and that issues and information presented within news items in the media tend to carry more credibility than those presented in paid media advertisements or in public relations material. It is also inexpensive: apart from the participants' time, there are relatively few costs. In addition, media advocacy on one issue can develop a closer rapport with journalists, which in turn may later benefit coverage of a separate, unrelated health issue. Similarly, it can build the capacity of public health agencies to treat strategic media initiatives as an integral component of health campaigns.

Media advocacy on any area of policy, including public health, can face certain problems, some being a function of success. For example, journalists may feel that coverage of a particular issue has reached saturation. Among other common problems are individual events (and people) are often more attractive as elements in a story than the policy issues underlying the story; health may be seen as a personal responsibility, with public health policy viewed as irrelevant, superfluous, unwanted, or costly to the taxpayer; in libertarian terms, public health policy involving the regulation of certain commercial activities may be seen as politically undesirable; and mass media can trivialize serious issues. As with all aspects of media advocacy, creative thinking and constant reevaluation of strategy are likely to offer the best solutions to these problems.

http://www.answers.com/topic/media-advocacy?cat=health

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These are some good steps for when we see articles on Lymphedema, especially those who are misinformative.

Letters to the Editor

Letters to the editor offer an effective vehicle for responding to
news articles, op-eds and editorials in newspapers and magazines. A few things to bear in mind:

Letters must be timely. Allowing a week, or even a few days to pass before responding to an article will greatly diminish the likelihood of your letter seeing print.

Write in response to a particular news item, editorial or op-ed.
Newspapers and magazines are not interested in letters that do not address a story or issue discussed in their pages. In your letter, make specific reference to the story's headline and the date it appeared.

Be brief and address a specific issue. Newspapers generally will not publish lengthy diatribes that go into the entire history or
background of an issue. Many only accept letters of 250 words or less. Be succinct, brief and as "to the point" as possible. Review the publication's instructions for submitting a letter to the
editor.

Be civil. Do not personally attack the writer. Your salutation
should be addressed "To the Editor." If responding to an opinion
column or op-ed, you may refer in your letter to the writer by name, indicate that you disagree with his or her point of view, and
explain why.

Be sure to include your name, address and a daytime telephone
number. Most newspapers will not accept anonymous letters; most will not publish a letter without first attempting to check the identity of the author.

Send your letter by e-mail or fax. When using e-mail, direct the
letter to the appropriate address for letters. Do use multiple
addresses, or copy others. This will diminish your chances of being published.

Many newspapers and some Internet news sites have a designated ombudsman or "reader's advocate" -- a staff member whose job is to address specific grievances of readers. If you feel strongly that a certain writer or columnist continues to unfairly portray the issues or facts with regard to an issue, a letter to the ombudsman can be another effective route.


Responding to Network Television and Radio News

The television and radio networks have various outlets for news.
Generally, there are two forms of news generated by major networks such as ABC, CBS, CNN, Fox News, NPR, MSNBC and NBC -- traditional news reports and commentary reported on a television or radio broadcast, and written news stories posted on network Web sites.

Some Internet news sites provide a forum for readers to respond to news articles. Several of the network-owned Internet news sites have recently assigned staff members to deal specifically with reader and viewer complaints.

If there is a television or radio broadcast that you feel is
inaccurate or unfair, make a note of the report, including the date,
time and channel of the broadcast. You should attempt to bring yourm concerns to the attention of the local news affiliate who aired thembroadcast or, when appropriate, the network responsible for the inaccurate or unbalanced report. Writing a letter to the news manager or producer, then following up with a phone call, is a good approach.  

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TOP 20 STATEGIES FOR A GOOD MEDIA INTERVIEW*

  1. Know why you are doing the interview.
  2. Who is the audience? Know to whom you are speaking.
  3. Establish interview ground rules immediately (subject, location, length) and stick to them.
  4. Even if you are an expert in the area, review the facts.
  5. Question your answers - play devil’s advocate.
  6. Coordinate with other relevant departments.
  7. Establish a friendly, cooperative, but professional atmosphere.
  8. Relax - you are the expert. Most reporters are generalists who are relying on your for information.
  9. If you don’t know - say so - but offer to find out and get back to the reporter if appropriate.
  10. Don’t say "no comment."
  11. Don’t go "off the record" - EVER.
  12. If a reporter has the facts wrong, gently correct her/him for the record. Don’t argue.
  13. Put your conclusion of SOCO first.. then expand.
  14. Speak English - not "jargonese." Avoid acronyms.
  15. Make your point quickly, with sound bites. Don’t feed the microphone.
  16. Avoid making personal commentaries or voicing opinions.
  17. Avoid answering hypothetical or "what if?" questions.
  18. Don’t repeat negatives.
  19. Listen carefully to each question and include it in the answer.
  20. Always provide materials you promised in a timely manner.

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Tips on Talking to the Media

The media offer opportunities to reach a vast audience with your own words and images.  Below are a few tips for honing your message and getting the most out of a media interview.

1.)  Don't use jargon. Industries and professions have their own linguistic shortcuts.  But remember who your target audience is, and communicate in language that they will understand.  The best messages are ones that your audience can relate to personally.

2.) Be pro-active.  Don't wait for reporters to call you. Be ready to suggest story ideas to them.  Help them understand issues and developments, and how they affect the interests of their audience.

3.) Be careful of how your use numbers.  Statistics can be boring and confusing unless you help the audience to understand what they mean.  Why are your numbers or reports significant? Do they represent a trend? Can you use examples that make date come alive for your listener?

                   Example: Instead if saying "We have added fitness facilities at our three senior center," say, "Three times as many seniors have access to a fitness facility especially for them."

4.)  Be postive aobut your programs.  Use media opportunities to sell your program or ideas.  be positive and upbeat about your organization and its activities.

5.)  Look at a questions as an opportunity to sell your agenda.  You are never restricted to simply answering the questions.  Rather, use questions as opportunities to make your points.

                  Example: If you are asked, "How will the withdrawal of Vioxx from the market affect seniors?" - don't feel you have to limit your answer to pharmaceutical marketing.  You can say, "It will be missed, but people with arthritis - and all older adults - can feel better by eating better and moving more."

6. Use story telling to frame your message.  Since the beginning of time, the most effective communicators have been storytellers.  Learn how to illustrate your point with examples or anecdotes that help the listener to visualize and empathize with your position.  Help the listener to identify with your story and understand its personal relevance.

7. Use your volunteers as spokespeople.  Look outside of your own experience for third-party validation.  Well-briefed volunteers who can give compelling interview are often more credible then paid staff. 

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Recruiting others to Advocate

Locating others who share your vision is important to an advocacy cause.  The more people involved, the more the public in general will hear about and listen to your cause.

In order to be an effective advocate, keep these 10 points in mind:

  1. Accentuate the positive! 
    Keep your eyes open for positive events that happen in and around your community initiative or because of your group's work.
  2. Emphasize the organization's values and accomplishments to the community. 
    Always highlight the positive values and vision relating to the organization's work.
  3. Plan for small wins. 
    People like to see results, no matter how small. Sometimes significant progress on a particular community issue is slow to show itself.
  4. Check your facts. 
    Understand the organization's issues and actions inside and out. This involves being able to quote a source of information or point to reliable statistics for claims you make publicly. Facts should guide your actions and public statements. If you are caught with inaccurate information or documentation, you could seriously damage the organization's reputation, embarrass yourself, and take attention away from important issues at hand.   It is vitally important to be truthful and straightforward or the message gets lost.
  5. Be passionate and persistent. 
    Working for community health and improvement can be an uphill battle, because so often the solutions need to be the responsibility of everyone, not just of a few. It's important to have the passion and persistence to overcome entrenched attitudes the public may have toward health and community problems, and possible public resistance to change.
  6. Be prepared to compromise. 
    Building healthy communities sometimes calls for compromise with groups whose goals may not be identical to your own.
  7. Stay the course. 
    Advocates have successfully gone head-to-head with some pretty powerful people, including politicians, CEOs of well-known businesses, and national lobbying organizations. Facing such influential opponents can be scary, especially when they will most likely have greater name recognition and resources to oppose you.  As an advocate for your community, you will have some credibility with the public--after all, you're fighting for their well being.
  8. Look for the good in others. 
    When you encounter members from groups that disagree with your goals or viewpoint, don't assume they are "out to get you" or ready to pick a fight.
  9. Keep your eyes on the prize. 
    Opponents may try to distract you from your advocacy activities by attacking you personally. By responding to their name-calling, you waste precious energy and lessen your chances for future cooperation or compromise with these people.
  10. Make issues local and relevant. 
    When you bring your issues to the local level, you increase your chances for public support. Issues become relevant to community members when they are close to home. Some ways to really bring issues home to people in your area include using statistics for the issue gathered locally, using such local role models as businesses or volunteers, or presenting the issues in a certain way to help community members understand how they will be affected.

Source: The Community Tool Box: http://ctb.ku.edu

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Advocacy for Lymphedema

http://www.stepup-speakout.org/Advocacy_for_lymphedema.htm

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APHA Media Advocacy Manual

http://www.apha.org/NR/rdonlyres/A5A9C4ED-1C0C-4D0C-A56C-C33DEC7F5A49/0/Media_Advocacy_Manual.pdf

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Advocacy: Ways to Advocate

http://www.pednet.org/advocacy/ways-to-advocate.asp 

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How to Communicate with Journalists

http://www.fair.org/index.php?page=122

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How to Write a Letter to the Editor

http://www.ehow.com/how_8921_write-letter-editor.html

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How to Write Letters to the Editor

http://www.concernedjournalists.org/node/68

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Media Advocacy Toolkit - example to use

http://tobwis.org/media-advocacy

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Lymphedema People Advocacy Links:

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Lymphedema Advocacy

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

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How to be an Advocate

http://www.lymphedemapeople.com/thesite/lymphedema_how_to_be_an_advocate.htm

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Sample letters to Medical Television Reporter

http://www.lymphedemapeople.com/thesite/lymphedema_advocacy_sample_letter_to_medical_television_reporter.htm

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Also:

Scroll down on our page:

Directory of Lymphedema Articles on HTML Pages

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

To find direct links to all advocacy information and resources.

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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 

Exercises for Lymphedema  

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

Diuretics are not for Lymphedema 

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

Lymphedema People Online Support Groups 

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

Lipedema 

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

Treatment 

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

Lymphedema and Pain Management 

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

Manual Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)

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

Infections Associated with Lymphedema 

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

How to Treat a Lymphedema Wound 

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

Fungal Infections Associated with Lymphedema 

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

Lymphedema in Children 

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

Lymphoscintigraphy 

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

Magnetic Resonance Imaging 

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

Extraperitoneal para-aortic lymph node dissection (EPLND) 

http://www.lymphedemapeople.com/wiki/doku.php?id=extraperitoneal_para-aortic_lymph_node_dissection_eplnd 

Axillary node biopsy 

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

Sentinel Node Biopsy 

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

 Small Needle Biopsy - Fine Needle Aspiration 

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

Magnetic Resonance Imaging 

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

Lymphedema Gene FOXC2

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_foxc2

 Lymphedema Gene VEGFC

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

 Lymphedema Gene SOX18

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_sox18

 Lymphedema and Pregnancy

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

Home page: Lymphedema People

http://www.lymphedemapeople.com

Page Updated: Dec. 28, 2011