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How To Plan a Local Lymphedema Event

Become an awareness ADVOCATE right where you live!!

Planning and Executing a Local Lymphedema Awareness Event

Earlier, we had some discussion of forming support groups for lymphedema and I posted an article how to start a lymphedema support group.

Another way we can raise awareness of lymphedema is through holding special events and/or participating in health fairs throughout our own communities.

Below is an article written by three people with extensive experience in organizing events. Joan White, is chair of the National Lymphedema Network, founder and chair also of theLighthouse Lymphedema Network.

Jeanne Tassis is founder and director of Circle of Hope Lymphedema Foundation and Josephine Carey is founder and director of Lymphedema Awareness Foundation.


How can you make lymphedema as well known as breast cancer? Breast cancer awareness got to where it is today by activists taking action to promote awareness. It is not easy to promote a cause that very few know or care about. However, as there was with breast cancer 15 years ago, there are ways to market lymphedema and start to slowly chip away at the mountain of ignorance in the USA.

This handout is purposely arranged in the order of event planning consideration. The amount of work, number of telephone calls, paperwork, frustration, and rewards that go into an event of this magnitude will be less stressful when more time is allocated for planning. The ideal plan would be to assign a person to cover each area of the event, such as presenters, hotel accommodations, facility location, hospitality, publicity, entertainment. Make sure that each person is responsible to complete the assignment by the designated date. You should plan to have meetings periodically to get updates from committee chairs. You MUST keep on top of all the event plans.

If every person who is involved with lymphedema in any way, did one thing to promote awareness, the mountain of ignorance would crumble faster.


Start planning your event ahead, the more time you give yourself the better you can spread your time. Suggest taking 12 months, although some of us have taken 4 to 24 months. Depending on the size of the event you must first decide on the date of the seminar. You cannot arrange the location, speakers, and other portions of your program without the date. Depending on who you want to attend will dictate the event day. For example, if your main goal is to encourage members of the health care, medical community and medical students to attend, Friday mid afternoon would be best and limit the program to less than four hours. If your main goal is to have patients attend, then a Saturday mid morning until early afternoon would be best. It will be worth while to include complimentary refreshments. The logistics of the location selection is based on who you really want to attend and how easily accessible it will be. Make sure that the location is handicapped accessible and suitable for presentations. You will lose people if the location is in a not so good neighborhood or not within good access of the area's transit system. Locations to consider are your area hospital, university, church hall, center court of a shopping mall or well traffic public area.


There are many areas of lymphedema which can be presented. If you have a theme you can narrow the topics to a specific focus. Based on who you want your audience to be, the speakers to invite should be experts and/or knowledgeable persons in the specifics areas in which they will be speaking. Research a little about each potential speaker before inviting them. Discuss and anticipate what your potential audience would want to know about and look for the speakers who would be able to provide this information. For example, the anatomy and physiology of the lymphatic system, what is lymphedema and how to detect/diagnose it, psychological aspect of lymphedema, skin care, the current method of treatment and it's components, insurance issues, how to take care of your condition after treatment.

Advise the presenter on the length of time they have prior to the event and ask them to keep within the allotted time. In advance of the event, print up the expected time table and present to the moderator, the speakers, the audiovisual person, and others directly involved with the program.

When you ask a potential presenter to speak, know their expertise first. It can be helpful to provide a list of subjects that you would like to have covered, for them to chose from. Ask them what they require in order to present for your event. Usually, they donate their time and presentation but plan to pay their hotel, airline, and food expenses. Try to select a broad range of speakers who can address the problems of lymphedema. Local speakers do not have expenses of travel, but they need to know you appreciate their contribution, so plan to provide refreshments and dinner for their generosity.

As a closing to the event, invite the presenters to participate on a panel for a question and answer session. This has proven so valuable for the attendees and the presenters are usually very willing to participate.


In our experience in planning, the sponsorships are low and therefore so are the funds available for advertising. You have to be creative and persistent to obtain free publicity. Contact every TV, radio and newspaper in your area and tell them about your event, at least three times over a period of six weeks coming up to the event and finally the day before. Some will ignore it while others will give you coverage which can reach more people in your area. Always contact the TV stations the night before the event because they are making their final decisions on what are the most important events to cover the next day. If there is any new updates about the event, for example a significant VIP is attending, tell the media.

Ask your contacts, friends and family about other local publications and newsletters that are available. Send in an article about the event and the local issues surrounding lymphedma. Follow up with a phone call to the contact person you sent the article too. This will help to bring it to their attention and establish a rapport. Be sure to check the deadline for submission for publication.

Prepare a flyer for your event and send it to your local American Cancer Society, breast cancer organizations, libraries, schools, college campus', cancer and lymphedema related centers and support groups. Also send it to your local physicians who could potentially come in contact with lymphedema. Post the flyer in public places, doctors offices, libraries, church bulletins, Town Halls, hospitals and have patients/volunteers help to circulate the flyers for you.

Send a personal invitation, along with a flyer to your US Representatives, CEO of hospitals, community leaders in both general and medical arenas.


City Mayors, State Representatives, State Senators are the front line people to getting a proclamation from the Mayor or Governor's office. A proclamation is an official document to proclaim your event as a lymphedema awareness day or month in your city or state. Usually signed by the Mayor of the City or Governor of the State. Talk about the local issues surrounding lymphedema in a personal letter and invite politicians to come and read the proclamation at the opening of the event. Preferably female politicians tend to have more sensitivity towards causes. If they do want to attend, tell the media! As this may attract them to come to the event. Significant politicians get lots of coverage on their movements.


Decide on your overall budget including amenities, audio/visual equipment, event and registrations supplies (pens, pencils, pads, door prizes, welcome baskets, food, drinks), pre and post event celebrations, presenter expenses such as hotel, airline tickets, and other expenses (posters, banners, background music, handout materials, video/photography personnel, rental of location and rooms). There are many ways to obtain funding. We will discuss two ways. If you have an existing support group who are willing to share the cost with individual donations, this tends to be a less stressful method of fundraising. For example, an average event can cost approximately between $4,000.00 to $6,000.00. If twelve people donated $500.00 each, they will probably also provide significant volunteer time to make sure that the event went smoothly. Smaller financial donations can be collected from others to cover the cost of welcome baskets, stationary, raffles items and other items that are not included in the budget.

If the above resource is not available to you, try asking your local lymphedema treatment center or therapist to help fund the event. Healthcare professionals and patients want to see what is available to maintain lymphedema. So invite lymphedema suppliers to come to the event and to contribute a donation for an exhibit. In our experience, the main costs have been presenters expenses and following, if not donated, location, food and amenities.

Other expenses can be donated with a lot of polite, persistent pleading. Local grocery stores, restaurants, soft drinks and soda companies have a set amount of food to donate to their community. Line up several food suppliers like beverages, pastries, sandwiches, desserts and goodie bags. Ask stationary businesses for surplus pads and pens etc. Support group members have been known to donate food items from shrimp, meat balls, fruit, vegetables, cheese platters, cookies and other snacks.

Raffles are a good way to entertain as well as to raise funds. Everyone likes to win something. The easiest way to sell raffles is at the registration desk. Have a separate table close by the registration desk and display the raffle prizes. Keep the tickets at reasonable prices. Raffles prizes can extend to fruit, cosmetic and bath baskets, silk scarves and/or flower arrangements. Do get creative!


If you are planning your first event, do expect to have the burden to be placed mainly on yourself. However, you need the support from others, whether it be minor or major, collectively it makes a great difference to your planning. You can start by asking your support group members or patients. If you are not in a support group, ask your contacts, family and friends. Your lymphatic therapist can be a good source for contacts, resources and help.

If you have enough people to be responsible for a section, set up committees and meet regularly for updates and set a deadline for each assignment. Types of committees are presenters, location and amenities, audio/visual, food, exhibitors, fundraising, raffle, hotel, transportation, hospitality and public relations.


Hand Outs

It is always good to have a few handouts to distribute to the attendees at the registration desk. Several of the presenters have been known to mail their presentation and exhibitors want to circulate information about their product. You can plan to have this literature collected and put into individual folders to hand out. Include the event program, a pen, cards for questions and more importantly, put the acknowledgments for supporters, sponsors and significant volunteers first.


Entertainment during the event is always well received before the event begins and during breaks. Lymphedema is depressing enough, music is always uplifting and creates a pleasant atmosphere. Ask your fellow lymphedema patients if they play an instrument or know of any entertainers who will donate their time. In our experience, we have had a pianist play for 45 minutes before an event began, a disc jockey play smooth jazz and classical music playing in the background.

Event Programs and Breaks

The attendees want to know who is speaking when, who they are and what they going to present. Ask each presenter to submit a short biography about their related experience on what they are presenting and their association with lymphedema. List the presentations in order of time. Do provide breaks during your program as this will help attendees to absorb the information presented. Include approximately 10 to 15 minute breaks and a longer break during the middle of your event for exhibit viewing and refreshments. Do consider the traffic flow when laying out the refreshments so that the exhibitors do have amble space and traffic to their booths.

Panel Discussion

If you can keep to the time you mentioned on your program for each presentation, this will be more positively received by the attendees. However, questions do arise from the audience and this needs to be address at a later time to keep to the time schedule. Provide a question and answer section at the end of the event to accommodate. During the opening of the event or at the registration, provide the guest with a card and pen. Advise the audience that because of time constraints, they can write down their questions and present them at this panel discussion. This section is usually the longest section of the event. We advise you to allot at least 45 minutes for this.


If you can provide complimentary food and drink, do so for all attendees, presenters, volunteers and exhibitors. It is very important to assign a person to be responsible for the refreshment layout, receiving, set up and clean up on the day of the event. If the food is to be delivered, pick a time that is before the event as to not be distributive. A cool storage facility is advisable to have before the breaks.


To make a presentation you need amenities. Ask the presenters what they need to make a presentation. For example, what audio/visual equipment is required. It is easier to provide amenities for a slide presentation than a power point presentation. You do need a microphone or several portable microphones, stand, podium, projection screen and if the presenters need assistance, make sure it is provided to them. It is very important to assign a knowledgeable audio visual person to set up and assist throughout the event.


Work with your state accreditation department or throughout the medical or educational facility, if you are holding an event there. You will need to give the accreditation department a copy of your program including a list of your presenters, their curriculum vitae, and time frame for the event. Include a copy or your flier, press releases and other written information about your group like a newsletter, objects or previous event programs.


Private Section

Presenters often like to rehearse or review what they are going to say prior to an event. If you can provide a private area with refreshments away from the main event area, this will better accommodate presenters. Usually presenters donate their time and their information and you do want their continued support in the future. Make it pleasant for them to come back.


It is advisable to check out the rooms and amenities yourself at reasonably priced hotels. Recommendations are always good. Usually hotels will offer you a tour of the rooms, facility and perks like health club, pool, shuttle service and more importantly how much they would discount the room rates. If you can, select a hotel as close to the location of the event as possible. Main stream hotels are less likely to incur any minor disasters like poor service or showers not working.

Dinner Celebrations

To welcome your presenters and to acknowledge your significant volunteers, provide and pay for a dinner the night before the event for all. This will provide a relaxing atmosphere to further talk about the final event plans and concerns. If many of your presenters do not arrive until the morning of the event, plan a dinner for after the program. Everyone is relaxed because the program is over and the conversation is lively.



You can never say thanks too many times. Give your supporters, sponsors, volunteers, presenters and donators a verbal mention at the opening of the event, written mention in the program and a thank you letter mailed to them after the event. Make sure you have their contact information. Do expect to send out approximately 80 thank you notes. If you like you can include pictures, the program copy and/or the feed back testimonials. Planning and executing an event means that you rely onmany people to help pull it off. Do make it a point to acknowledge what they have done for you.


All expenses need to be tracked if a reimbursement is required. Ask all volunteers, supporters and presenters to provide one if they expect a reimbursement and stress that this is mandatory in order to receive a prompt payment. This also helps you to make a public record of financial transactions and to budget for your next event.

Clean Up

It is important that you leave the facility in the condition you found it. This will contribute for you to use the facility again. If you can, have a group of people assigned to this task to help break down exhibits, registration and raffles tables, put chairs away and clean up of the refreshments etc. It is best if you are free to leave with the presenters and significant volunteers for drinks afterwards to discuss the event.


A great deal of commitment and staying power is necessary to pull off a successful event. If you don't think you can chair the a local lymphedema awareness event maybe you can participate in the planning of another. Hundreds of hours are spent in planning, coordinating, contacting, meetings and executing the event. You will encounter small triumphs and more disappointments. At the end of the event, you will have taken an extra chip out of that mountain of ignorance and made significant difference in the lives of people who surround this dreadful condition.

Lymphedema People Online Support Groups

Join us as we work for lymphedema patients everywehere:

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

Lymphedema People Forums

In our forums section, you will find over 3,000 posts with hundreds of additional articles encompassing every aspect of lymphedema you can imagine. Information, questions and answers that will enable you to discover not only how to live with lymphedema, but to manage it, overcome it and lead a life that is rich, meaningful and rewarding.

Visitors can read the forums, but only members can post and answer questions. Come and be a part of the largest lymphedema online network in the world.

Here is a list of the forums:

Welcome Family

Membership Rules in New Forums

Lymphedema People Administrative, Management

Registry of Lymphedema Doctors

Lighthouse Lymphedema Network Lymphedema Education & Awareness Program

Events Calender

Personal Stories

Family Talk

Daily Lives with Lymphedema

Lymphedema Information

Children and Lymphedema

Young People with Lymphedema

Leg Lymphedema

Complications of Lymphedema

Lymphedema Infections

Treatment Information for Lymphedema

Therapists, Clinics and Hospitals

Skin care, conditions and complications

Lymphedema Wounds

Lymphedema Lifestyles

Lymphedema and Cancer

Lymphedema Articles

Advocacy and Governmental Resources

Genetics, Research, Lymphangiogenesis, Angiogenesis

Organizations, Support Groups, Vendors



Lymphatic Filariasis


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