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How To Start a Lymphedema Support Group

Become a lymphedema advocate right in the community where you live!

Starting a Lymphedema Support Group

The possibilities are limitless for the potential of lymphedema support groups! We at the NLN know that it is support groups nationwide that make the difference in putting on the pressure for issues such as treatment, research, and reimbursement.

The NLN will be happy to provide your group with educational materials for distribution to your members. We will also list your group in our Resource Guide online and in our newsletter if you are an NLN member or are affiliated with one of our affiliate treatment centers. Please call our office to get a Support Group Listing Application once you get up and running!

In addition, you may want to learn how to plan a local lymphedema event to raise awareness in your own community,

How Do I Start the Support Group?

Finding Potential Group Members

The first step to take in establishing a support group is, of course, to get the word out to lymphedema patients in your area. This can be accomplished in a number of ways:

Personal contact with lymphedema patients

Post a notice in the area's church bulletins

Post a notice in the offices of treatment centers or therapists who serve lymphedema patients

Place an advertisement in your local newspaper, or at your local radio or television station

Post a notice in local pharmacies and health food stores

Post a notice at the local main and branch libraries

Send a notice to all of the local social service agencies

Contact your local chapters of Reach to Recovery and the American Cancer Society

Contact local cancer support groups

Talk to your own medical team

At the First Meeting

Select and reserve a meeting room large enough to accommodate the anticipated attendance Possible host sites: Your home, the public library, the local hospital, or a church. Try for a convenient, central location

Call or send out the meeting reminders one week in advance to those who have previously expressed their interest

Arrange to have some current lymphedema literature available at the first meeting

Tell the group why you decided to form the group and what you hope to give and receive from the group. Ask for their needs & expectations as well

Propose a regular meeting schedule and format

Emphasize that membership in the group is informal and that are no membership dues. (You may wish to introduce a freewill offering basket should be to help defray the cost of duplicating articles, membership lists and purchasing relevant books and periodicals for the group's lending library.)

Use a sign-in sheet to get contact information for future use

Encourage the attendees to bring fellow Lymphedema patients to the next meeting

After the Initial Meeting

Arrange for a permanent meeting site. The site should be centrally accessible and cost-free to the group. Audio/visual capabilities are a plus Once you have a confirmed site, create a poster or flyer and disseminate it to the same locations that received the original invitation notices

Request the local newspaper to weekly print the notice of the group's meetings (including a phone number to call for further information)

Prepare an initial membership list and enlist the aid of several of the original attendees to call the others to advise them of the regular meeting site and time

Arrive at the meeting site with one or two other members one half hour before meeting time to set up the chairs, and put out the literature, sign in sheets, blank name tags, and offering basket.

Make sure to get any new attendees' full name, address & phone number.

Begin meeting with words of welcome to the newcomers

Announce the next meeting date & time. Ask attendees to take the calendar and membership list with them. Ask attendees to suggest possible topics/and or guest speakers for future meetings

The National Lymphedema Network is the foremost authority on lymphedema in the country and is dedicated to the development of lymphedema awareness and education for patients, health care professionals, family members, and the general public. Please contact our office if you are in need of educational materials or updates on current legislation, reimbursement and lymphedema research and treatment.

We also will be happy to assist you in obtaining speakers for your support group meetings. You can contact us by phone at: 510-208-3200 (or you can leave a message on our toll-free Infoline at: 1-800-541-3259), or by sending an email to

Our sincere thanks to Anne Schuch of Bosom Buddies Breast Cancer and Lymphedema Support Group for the use of her support group guidelines.

National Lymphedema Network

Lymphedema People

Support Group Guidelines

Have a regular time, date, and meeting place so that people can depend on when and where the meetings will be. (You can move it for special events.)

As an outreach activity, ask members to bring a friend who might be interested or at risk.

Advertise your meeting well in advance. Post announcements in treatment facilities, local newspapers, healthcare facilities (if they permit it).

Have a contact person listed with your announcements so people can call for more information.

Have a time limit for the meeting and stick close to it.

When you are having group discussions, have a time-limit for speaking and enforce it. Make sure everyone who has something to say gets a chance to speak.

Have a little social time for people to chat with each other.

Treats are good too! Refreshments tend to make conversation easier.

Offer a chance to sign up on a contact list and circulate that list to all who voluntarily sign it.

If meeting in an eating establishment, try a place where you order and pay at the counter, or one that will do separate checks. Encourage people to tip generously so you are more likely to be welcomed back.

Have an outside presenter sometimes – but not always. Ask the group what they’d like to do at future meetings.

Try to give all participants a sense of ownership and inclusion. Find roles for everyone who is willing.

Asking people to do specific tasks. Just asking for “help” may not get many responses.

Change leadership from time to time. There are always newly diagnosed and they too become old-timers. Fresh blood is good for keeping things interesting and active.


*This is actually from a Fibromyalgia website, but excellent info non the less.

The major objective of a support group is to provide a warm and caring environment, where the illness is not questioned and where the members feel they are accepted. Knowing that others share this journey offers comfort and reassurance. People with FM/CFS/ME often feel alone with their disease and with the everydaystruggles this illness brings to their lives.

We've included the following information to assist you in starting your own support group. Contact us if you have any questions or comments.


· Try to locate rent-free meeting space. Many Hospitals, libraries, churches and community and senior centers allow groups to use their facilities at no charge. For small groups, you might want to use members homes.


· Carefully consider the time you choose to hold a meeting. Many FM/CFS/ME patients function better at different times of the day. Some people still work while others require working family members or friends to transport them to the meeting. You might want to consider having daytime and evening meetings.

· Meetings should have a set length. Meetings should be long enough to address the issues at hand, but not so long that it is difficult to sit through. Many FM/CFS/ME patients can not sit for prolonged periods of time.

· Most groups meet once a month, but depending on the needs of their group members, some meet more often (i.e. bi-weekly or weekly).


· Many groups choose a meeting format that alternates between discussion sessions and speaker sessions, thereby providing time for both sharing and educating.

· Some groups focus on a specific issue such as the education of health care providers or the general public. The focus may change as the group evolves so it's important to continually evaluate the needs of the group as a whole.

· Search for volunteers to be your co-leaders. Check with local schools, friends, relatives, hospitals to start with a small core group of people that will work with you in setting up and leading your support group.

· Meet with your co-leaders on the specifics of the group. Determine what supplies you'll need to get started, what your goals are, the frequency of meetings and a budget. Delegate responsibilites for each person. What do you want to accomplish at each meeting? Who will be responsible for what? Will you have refreshments? Can child care be provided, these are all questions you'll need to resolve before you begin having meetings.


· Announce basic meeting guidelines at the beginning of each session as a reminder to regular attendees and new participants.

· Never allow one person to monopolize the time. Meetings should provide an opportunity to share feelings and frustrations for all members.

· Observe time limits. Start on time and end on time so that members feel you are reliable and if they should have babysitters, they will be able to work with them easier.

· Be up front if no child care is available, let members know ahead of time if children are welcome and if not, don't start making exceptions.

· Be prepared to have you or your co-leaders do most of the speaking at the first few meetings until your members begin to feel comfortable with each other.

· Place chairs in a circle and close enough that all members can hear.

· Remember that it is normal for things to move slowly in the first stages of your group's formation. It is important not to go too fast. Let people get to know each other, enjoy each other and build trust within the group.

· Give your support group at least 2 months to get going. In the beginning members may come and go but if you keep at it, you will eventually have a small core group that is always there.

· At the beginning of each meeting, have handouts with the goals for that night, contact names and phone numbers and reminders of when the next meeting will be held. That way all visitors will have a written reminder. Have some informational handouts for members to read also. Newly diagnosed members will have many unaswered questions.

· Step up a support system and network for your members in between meetings. Hand out lists of phone numbers and email addresses. Encourage your members to talk with each other in between meetings.

· Because many FM/CFS/ME patients are chemically sensitive, hold fragrance-free, smoke-free meetings for your members.

· Keep injecting fresh ideas, new guest speakers and have a written plan for each meeting to keep everyone on track. Keep it lively, interesting and fun so the members look forward to getting together.


· Newspapers often print small articles or free weekly or monthly listings to announce local meetings. Ask them to publish information on support group events in the Community Activities (or a similar) section of the paper. Be sure to note the meeting place, date, time and a phone number so interested people can call for more information. A note: If you include your phone number in any information, consider investing in an answering machine. Recording a message about your group and the next meeting will prevent you from repeating the same information to everyone who calls. If an answering machine is not available, consider rotating the number that is published. For example, the first week, the group leader's name and number would be listed and the second week, the co-leader's information will appear. This will relieve some of the burden of one person having to answer all the inquiry calls. It is also helpful to list the times the contact person is available to take calls.

· Many organizations also allow free advertisments for meetings and such on their websites.

· Cable T.V. stations sometimes provide free listings on community bulletin boards. Also, radio stations will sometimes air short public service announcements.

· Flyers often help attract participants when placed in doctors' offices, libraries, pharmacies, health food stores, grocery stores, pet stores and other common areas.


· Many groups charge dues to cover general expenses such as copying, mailings, phone bills, etc. You will have to evaluate group expenses to determine a reasonable dues structure for your group. If you decide to ask for dues or contributions, start at the first meeting as it is more difficult to get people to contribute if they are used to the group leader taking care of everything. Too many groups disband because group leaders took responsibility for all of the group expenses until they could no longer afford to and then had to ask for donations and/or dues.

· Some groups choose not to charge specific dues, but instead request contributions. Members of the support group should decide what expenses they are willing to support by making nominal contributions at each meeting. Most groups “pass the hat” so members can discreetly make contributions they can afford.


· Have a sign-up sheet available at meetings, so you can maintain a list of current group members. Invite people to share their name, address, telephone number(s) and e-mail address. Distribute the roster, with permission of persons listed, so members can support each other between meetings.

· Ask people to note areas in which they might be able to offer assistance such as providing telephone coverage, supplying refreshments at meetings, coordinating speakers, participating in media/public relations interviews or Awareness Day/public policy activities.


· When requesting help from volunteers, set a time limit on the duty so it's not overwhelming. For instance, “Could you be the greeter at the January meeting?” You'll be more likely to get help if the length of the assignment is limited.

· If possible, have a back-up person available for key responsibilities.


· New group members often find it helpful to receive an information packet prior to or at their first meeting. Information packets can also be good resources for family members, health care providers, the general public, and the media.


· FM/CFS/ME Fact Sheet - Outlines all aspects of this illness for others to learn from. You are welcome to copy and reprint all information on this page.

· Frequently Asked Questions - Questions related to FM, CFS/ME, Disability as well as a Misc. section.

· Drug Information - Lists of medications being used for the treatment of FM/CFS/ME.


Some groups maintain a Telephone Help Line, which allow FM/CFS/ME patients to receive support between meetings. Although this is an ambitious project, if it is planned well and monitored properly, it can be very beneficial to group members. This should be considered a group activity so include all members when making the decision to begin this project. The following information will help you:

· One person should act as the Help Line coordinator and manage the volunteer schedule.

· Volunteers can be scheduled to staff a central telephone line at set hours on specific days or to receive calls at their homes either by using call forwarding from the group's phone number or by notifying callers of the volunteer's home number, using an answering machine or voice mail.

· The support group's answering machine message should be kept current, providing the Help Line phone number, hours the Help Line is available and the volunteer's first name only.


Patients frequently ask:

“How can I find a doctor who knows about FM/CFS/ME?”

Your support group can compile a list of health care professionals in your area who have diagnosed and treated members of the support group and other patients. A volunteer should be responsible for maintaining the list and making it available to patients and family members.

For help in compiling a referral list, visit Doctor Search. We offer the following information:

· Doctor List · After You Find A Doctor · Check on Your Doctor · Preparing for Your Visit


Many support groups allow members to borrow items from a lending library. To start a lending library, ask group members to contribute FM/CFS/ME related or chronic illness-related items such as books, audio tapes, videotapes, medical and media articles and past issues of research news and articles.


Many FM/CFS/ME support groups publish a newsletter to communicate with its members between meetings. Support group newsletters should be brief, as most patients prefer shorter, more frequent issues. Suggested contents include:

· Support group meeting information, including dates, times, locations and topics for upcoming meetings

· General FM/CFS/ME information

· Local and national news regarding FM/CFS/ME and chronic illness, including summaries of meetings and conferences

· Opportunities to become involved in advocacy and fund raising efforts

· Articles written by health care professionals and patients that are of general interest to those with FM/CFS/ME (i.e., coping issues, treatment and research news, public policy activities, etc.)

· Reviews and summaries of medical or media articles and other periodicals, books, audio tapes, pamphlets - including ordering information if applicable

· Patient ads such as those looking for services, roommates, etc.

· Local community resources with contact information when applicable

· Humorous articles and cartoons


In 1993, the FM/CFS/ME community identified May 12th as a day to make the general public and government officials aware of the devastation caused by FM/CFS/ME. Your group can help continue this important awareness effort building by coordinating local Awareness Day activities. For more information on Awareness Activities visit our FM/CFS/ME Resources Awareness pages.


There are many issues to consider when having a support group meeting. Although you can't anticipate every issue that may arise, you should be aware of the following 12 positive and negative forces that affect most groups:

Group Size

Groups that are too large make it difficult to meet the needs of all the members and should be broken up into subgroups. Groups that are too small can create a sense of “forced intimacy.”

Session Length

This will depend on the physical/mental ability of group members and size of the group. Enough time needs to be allowed for each member to have an opportunity to share, without allowing the session to last beyond the physical and/or mental durability of its members.


Take into consideration accessibility, privacy and comfort. Also consider the seating arrangement (a circle usually works best in creating a sense of cohesion).

Member Composition

Individual personalities, backgrounds and styles of expression need to be accommodated and worked with, even though a group may already have a sense of universality. Remain aware of who is in the group and how to best communicate with each person.

Level of Goodwill

Sometimes members in a group will be resistant, hostile or disruptive. It is wise to have a plan for dealing with this inevitable occurrence before it happens. It is equally important for group members to have some input in developing this plan.

Level of Commitment

When the level of commitment wanes, it is a sure sign that members are not getting their needs met. Evaluation on a regular basis is vital for maintaining a high sense of member satisfaction.

Level of Trust

Trust level in a group waxes and wanes as the group progresses. It is important to be aware of forces that can contribute to a low level of trust. These forces include fear of breach of confidentiality, fear of being criticized or judged, existence of cliques within a group, hostile group members and inadequate group leadership.

Members' Attitudes Toward Each Other

If a leader finds that certain members of a group simply do not care for each other and this interferes with group cohesion, meeting with those members individually may be necessary to try to resolve the problem.

Members' Attitudes Toward the Leader

The leader must be open to the fact that he/she may not be appropriate for the group. Regular evaluation and feedback from the group members is vital.

Leader's Attitude Toward Members

The leader must also be aware of any biases or prejudices he/she may have toward certain group members or general populations. Members need to speak up if they perceive a bias or prejudice the leader may not recognize.

Interaction Patterns of Members and Leader

The group should try to speak to other members of the group as well as to the leader. The leader needs to remain aware of his/her level of interaction so he/she does not dominate the group.

Stage of Group

Groups are made of living people who grow and change, and as such groups are living, developing and dynamic as well. Groups go through different growth stages and issues or concerns need to be taken in the context of the developmental stage of the group.


You know you can't do everything, and you also know that in a “mutual help” group you shouldn't. Other members must become involved. Here are a few examples to help you enlist other participants:

· Identify and name the jobs that need to be done. Consider “brainstorming” at one of your meetings. Come up with a list of the jobs and be as clear as possible as to what will be involved. Circulate a sign-up sheet at meetings.

· Ask potential volunteers individually in private. Be sure to indicate how you will support them if they have a problem.

· Ask them to serve in a specific job BUT allow them to volunteer for something else as well.

· Always specify how long they will be expected to serve, for example: three months, six months, etc. Consider a fixed term of one or two years for some jobs.

· If you encounter problems in finding one individual to do a specific job, ask two people to volunteer to share the responsibility of that job. More people will accept if they know they won't be expected to do everything.

· Be sure to continuously acknowledge people publicly for the jobs/tasks accomplished. This can be done at meetings, as well as through the group's newsletter.

· Circulate or hand out skills/resources sheets. Every member is asked to complete a sheet with their name and skills description, type of personal contacts (journalist in the family, uncle is a caterer, etc.) and phone number.

Eventually you will have a list of names, skills and resources to match up with your jobs. It may be a helpful list to check for a replacement if someone suddenly becomes ill or leaves the group. The skills category may provide new and exciting positions, example: if someone just writes “throws great parties,” sign them up to be the social chairperson. Remember, it is never too late to start a sign-up sheet. Identify your helpers now!


Support group leaders should make every effort to offer unbiased, well-rounded programs. Here are some tips for finding speakers:

· Tap the experience and contacts of your group members because a member’s personal knowledge of a speaker is usually a good reference. Also, a potential speaker may be more likely to respond to someone he/she knows personally. Does someone in your group know of a local professional, e.g., a physician, therapist, lawyer, or another who is knowledgeable and can be approached?

· Contact local social service and government agencies and hospitals (sometimes they already have lists of possible speakers – contact public/community relations departments). If you know what you want, start at the top by writing a letter to the Director or C.E.O.

· Write or call the chairperson of a specific department at your local college or universities. For example, the Psychology Department for speakers to address stress, the Nursing Department for self-care instruction, etc.

· Government agencies – Social Security Administration, Division of Vocational Rehabilitation, etc.

· Lawyers – especially those specializing in discrimination law, financial planning, insurance, and disability law.

· Professional associations - (for psychologists, social workers, nurses, doctors, county medical society, others) to ask for local speakers on subjects such as: stress management, a specific type of therapy, medications, choosing a good therapist/doctor, etc.

· Alternative health providers – on herbal medicine, meditation, yoga, or another. (Use caution when exploring this option for minimizing risk to group members.)

· Pharmaceutical company representatives - (a panel with several representatives will offer a more well-rounded presentation), or a local pharmacist on drug interactions and taking medicines wisely.

· Representatives from other FM/CFS/ME support groups, to speak about their group's best meetings, discussions, speakers, and other successful activities they have had.

· Consider using a pre-recorded or “canned speaker,” i.e., tape of radio interview show (25 minutes long or less), conference presentation, portion of a TV program, etc. Or start a tape library of your own, by asking some of your “live guests” if you may tape their presentation for your group’s lending library collection.

Medical Support Group Dynamics

Finding a Support Group

Article date: 1998/11/06

Have you ever thought about getting involved in a support group, but didn't know what to look for? Support groups are widely available and can provide useful resources. Studies show support groups can help to improve quality of life and may even boost immune system functioning.

What To Look For

Dr. Pati Beaudoin, a psychologist in private practice who has run a therapy group for cancer survivors for several years, recommends the following when searching for a therapy group:

Meet first with the therapist or moderators who run the group.

Determine the credentials of the health professional. Make sure he/she is licensed and has experience working within the medical system.

Bring a list of questions to ask the therapist about any fears or concerns you may have.

Find out what the group's policies and procedures are.

Ask the therapist who, if anyone, may be screened out of the group.

Ask the therapist for a list of reading materials.

Try to pay attention to how safe you feel with the therapist. Keep in mind the connection with the therapist is even more important than what they know.

Meet with more than one group leader to do comparison-shopping.

A therapy group is a place where you should feel comfortable and able to take risks with other group members.

The Mayo Clinic Health Oasis web site explains each type of support group has its advantages and disadvantages. Their site states, “You may find you prefer a structured, moderated group. Or you may feel more at ease meeting less formally with a small group of people…and avoid any group that promises a cure for cancer or suggests support groups are a substitute for medical treatment.” They suggest no matter what type of group you decide to take part in, try it out a few times to see if it is useful or comfortable. “You may have to experiment with different kinds of support groups before you find one that meets your needs,” they explain.

A Group is Formed

Many times groups form because someone has the motivation and initiative to create a place for support. Two and a half years ago, Chuck Kaysing took on the challenge of developing a prostate support group in Montgomery, Ala. When he was diagnosed 12 years ago, there were no support groups for men with prostate cancer. He spread the word by visiting urologists' offices and hospitals, and obtained funding from a pharmaceutical company. After the first meeting, Kaysing joined efforts with the Man to Man program, an ACS self-help group for prostate cancer survivors.

The group continues to thrive through word of mouth and advertisements in the local newspaper. “The biggest challenge,” Kaysing reported, “is men are reluctant to discuss prostate cancer.” Kaysing, a retired Air Force Colonel, serves as a role model for other men who find it difficult to ask for help. These groups provide a place for men to realize, “I'm not the only one.” Kaysing is able to share encouragement and education through his own experiences. “It feels good if I can help someone else. I didn't have anybody, so I want to be able to give back to others,” he said.

American Cancer Society's Man to Man Program

Man to Man provides a forum for men to learn about diagnosis and treatment options through presentations, written materials and videos. Specialists in various fields related to prostate cancer share information on medical topics and quality-of-life issues. A comfortable and confidential meeting environment encourages men and their families to discuss concerns openly and honestly and to share solutions to common problems. Although information is provided, medical advice is not.

Sarah Mitchell, MS, Project Assistant for the Man to Man program, reports participants appreciate the ability to talk to other men who have lived through the experience of prostate cancer. According to Mitchell, there are over 350 Man to Man groups across the country and every group is different. People should not hesitate to find out what it is like. “Most groups have a loose enough structure, so that if you don't like it, you don't have to stay,” said Mitchell.

An Inside View

After being diagnosed with prostate cancer, Bill Harbin was grateful to find others who shared similar experiences. Bill joined the Man to Man group 2 ? years ago, and discovered the benefits of group support.

He explained it was very helpful being with people who are in similar circumstances, sharing experiences and without the group, he feels he would miss out on important cancer information related to new treatments and techniques. He pointed out the camaraderie has also been very encouraging. Although men may initially be reluctant to join a group, Harbin said, “Once they start hearing other men talking, they just open up. The more people share, the more they get from the group. You have to share experience to gain experience.”

Other Support Groups

A different type of support is available through the American Cancer Society's Breast Cancer Network. The BCN is a network of people and programs fighting breast cancer through research, support for breast cancer patients and their families, and information for all women. Reach to Recovery is a support program for women experiencing breast cancer. Reach to Recovery gives women the opportunity to talk one-on-one with someone who has been diagnosed with and survived breast cancer. Carefully trained volunteers visit patients in the hospital to answer questions, share information, and demonstrate exercises to speed up recovery. Ena Wanliss, Manager of ACS Breast Cancer Programs explained the program offers a way for women to share concerns on an on-going basis. “There is no restriction,” said Wanliss, “to the number of visits a woman can request.”

Support Group Benefits

Article date: 1998/11/06

They provide valuable information. Through participation in groups, people can increase their knowledge of the latest treatments and techniques.

They teach coping skills. The information and advice that groups provide can assist in the management of specific symptoms.

They provide a place to share common concerns. People who are going through similar experiences can provide encouragement and support.

They provide emotional support. Groups provide a place to identify and express stressful feelings. They can help to improve mood and decrease psychological distress.

They provide affirmation and advocacy. Groups serve as a source of validation and can offer avenues to promote health care.

Support Group Formats

Article date: 1998/11/06

Professionals such as psychologists, social workers, or nurses, lead some groups, which are usually called therapy groups.

Group members lead some groups, which are usually called peer or self-help groups.

Some groups are limited to a certain number of weeks, while others are ongoing.

Some groups are composed of people with the same type of cancer, while others are composed of people who are undergoing the same kind of treatment.

Some groups are educational and/or structured with speakers, while others are informal emphasizing emotional support and shared experience.

Some meetings are drop-ins with a cancer survivor serving as coordinator, while others have a class format that teaches coping skills.

Some groups are just for patients, while others are for spouses, family members and/or friends.

There are some alternative group formats that are best suited for people with mobility restrictions, such as online Internet support groups, e-mail discussion groups and telephone support groups.

In these cases, it is important to look for groups affiliated with a reputable organization and/or hosted by a trained professional. No matter what kind of group you choose, it should be guided by a skilled facilitator.

Lymphedema People Online Support Groups

Join us as we work for lymphedema patients throughout the world:

Advocates for Lymphedema

Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.


Pat O'Connor Lymphedema People / Advocates for Lymphedema

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.



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!




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.



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.



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.


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.



Teens with Lymphedema

All About Lymphoedema – Australia

All About Lymphedema

For our Google fans, we have just created this online support group in Google Groups:


Group email:


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Updated Nov. 22, 2011

how_to_start_a_lymphedema_support_group.txt · Last modified: 2012/10/16 14:40 (external edit)