Lymphedema, Support Group, NLN, patients, advocacy, GiveVoice

Starting a Lymphedema Support Group

Bandages, Holding hands, lymphedema support group, tattoo

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. Click here for our 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:

    1. Personal contact with lymphedema patients
    2. Post a notice in the area's church bulletins
    3. Post a notice in the offices of treatment centers or therapists who serve lymphedema patients
    4. Place an advertisement in your local newspaper, or at your local radio or television station
    5. Post a notice in local pharmacies and health food stores
    6. Post a notice at the local main and branch libraries
    7. Send a notice to all of the local social service agencies
    8. Contact your local chapters of Reach to Recovery and the American Cancer Society
    9. Contact local cancer support groups
    10. Talk to your own medical team

At the First Meeting

    1. 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
    2. Call or send out the meeting reminders one week in advance to those who have previously expressed their interest
    3. Arrange to have some current lymphedema literature available at the first meeting
    4. 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
    5. Propose a regular meeting schedule and format
    6. 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.)
    7. Use a sign-in sheet to get contact information for future use
    8. Encourage the attendees to bring fellow Lymphedema patients to the next meeting

After the Initial Meeting

    1. Arrange for a permanent meeting site. The site should be centrally accessible and cost-free to the group. Audio/visual capabilities are a plus
    2. Once you have a confirmed site, create a poster or flyer and disseminate it to the same locations that received the original invitation notices
    3. Request the local newspaper to weekly print the notice of the group's meetings (including a phone number to call for further information)
    4. 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
    5. 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.
    6. Make sure to get any new attendees' full name, address & phone number.
    7. Begin meeting with words of welcome to the newcomers
    8. 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: 510-908-1660 (or you can leave a message on our toll-free Infoline at: 1-800-541-3259), or by sending an email to nln [at]

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