How To Start a Lymphedema Support Group

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How To Start a Lymphedema Support Group

Postby patoco » Mon Sep 04, 2006 2:05 pm

Starting a Lymphedema Support Group

The possibilities are limitless for the potential of 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!

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
Last edited by patoco on Mon Sep 04, 2006 2:11 pm, edited 1 time in total.
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Support Group Guidelines

Postby patoco » Mon Sep 04, 2006 2:09 pm

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.
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