Start A Sarcoidosis Support Group


  continued from

1.) Starting a New Self-Help Group; Things to Consider.

  • Purpose: Decide on the purpose of the group. Will the group provide emotional support,
    education, advocacy?
  • Membership: Who can attend the meeting who cannot?
  • Meetings: Where, how often, how long? Guest speakers, lectures, group discussions?
  • Use of Professionals: Consider using professionals as advisors, consultants, or speakers and
    as sources of information and referrals.

2.) Get Organized.

  • See if there is a group already in your area.
  • Check the S.O.S. Support Group Database.
  • If you find a existing group contact them and ask for guidance they might have.

3.) Consider Going to a Similar Group.

  • This will give you a feel on how they operate*. You may consider borrowing their best techniques
    to use in your own group.
    *Before going to any group it is best to call and ask if you can attend.

4.) You Don't Have to Start a Group by Yourself.

     There are others that share your disease. To generate interest you can:

  • Circulate a flyer or letter to doctors and hospitals asking for their patients with sarcoidosis letting
    them know how and where they can contact you.
  • Make copies of flyers and post them in places you feel appropriate. e.g. library, community center,
    clinic, post office.
  • Publish a notice in your church bulletin and newspaper.

5.) At the Meeting.

  • Try finding free space at a church, library, hospital, community center, etc.
  • It is best for your group to meet at the same time, place and weekday each month, week, etc.
    e.g. third Wednesday of the month at 7:00 p.m., Rush North Shore Medical Center.
  • Ask everyone attending if they would be interested in sharing the responsibilities of organizing the
    group. Involving several people in the initial work of the first meeting will show that the group is a
    cooperative effort.
  • Expect your group to experience "ups" and "downs" in terms of attendance and enthusiasm.
  • Stay in touch with the needs of your members.

IDEAS AND CONSIDERATIONS FOR STARTING A SELF-HELP MUTUAL AID GROUP FOR SARCOIDOSIS excerpt from Sandra Conroy's book Sarcoidosis Resource Guide And Directory ©

A self-help group can offer persons with sarcoidosis an opportunity to meet with others and share their experiences, knowledge, strengths and hopes. Run by, and for their members, a self-help group can be described as a "mutual help" group since members are helping one another. Dozens of different self-help groups are started each week across the nation by ordinary people with a little bit of courage, a fair sense of commitment, and a heavy amount of caring. The following guidelines are based on experiences at the Self-Help Clearinghouse, helping hundreds of individuals to start different groups. While there is no one recipe for starting a group (you will be looking at local resources and members specific needs), we have listed below a few general considerations you may find helpful.

1.) Do not try to Re-invent the Wheel.

  • If you are interested in starting a sarcoidosis group, talk to people who are involved in groups now or have started ones before. Check with your Sarcoidosis Resource Center to find out about existing groups. Contact some of those groups by phone or mail. Ask for any sample materials they have flyers, brochures, newsletters, press releases, or other printed material. If you have a local self-help clearing house in your area, determine what help they can provide you in developing a group. Consider attending a few meetings of other types of self-help groups to get a feel for how they operate--then borrow what you consider their best techniques and formats to use in your own group.

2.) Think "Mutual-Help" From the Start.

  • Find a few others who share your interest in starting, (not simply joining) a self-help group. Put out flyers or letters that specifically cite this. Your "core group" or "steering committee" can help prevent you from "burning out". But perhaps more importantly, if several people are involved in the planning and initial tasks (refreshments, publicity, name tags, greeters, etc.), they will be role models for others at the time of the first public meeting. They will demonstrate what self-help mutual aid is all about not one person doing it all, but a group effort. Try to enlist the aid of professionals who may see sarcoidosis patients. Ask if they would refer to you any patients who may be interested in helping to start a group. Ask those same professionals if they would be willing to speak before any group that is eventually started.

3.) Find a Suitable Meeting Place and Time.

  • Try to obtain free meeting space at a local church, synagogue, library, community center, hospital or social service agency. The facilities should be barrier free. If you anticipate a small group and feel more comfortable with the idea, consider initial meetings in members' homes. Would evening or day meetings be better for members? Most prefer weeknights. It is easier for people to remember the meeting time if it's a regular day of the week or month, like the second Thursday of the month, etc. Some people like to have the meeting around an informal supper, such as a potluck. A few even have meetings at a diner or restaurant.

4.) Publicizing and Running your first Meeting.

  • Reaching potential members is never easy. Consider where people with sarcoidosis would go. Wouldn't they be seen by particular doctors or at pulmonary clinics at local hospitals? Contacting physicians and other health professionals (e.g., local Lung Associations) can be one approach to try. Flyers in post offices, hospitals, and libraries may help. Free announcements in the community calendar sections of local newspapers can be especially fruitful. Better yet, try phoning the editor, and simply explain what type of group you want to start. Indicate how you would like to reach out to other people who have this condition, while educating the public to the problem. Be prepared with some facts on the disorder that can be expressed in non-medical terms. Also consider providing the names of physicians or health professionals who know about sarcoidosis and would be willing to speak to a reporter. Remember to clear the use of their names with them before using them as spokespersons.
  • The first meeting should be arranged so that there will be ample time for you to describe your interests and your work, while allowing others the opportunity to share their feelings and concerns. Do those attending agree that such a group is needed? Will they attend another meeting, helping out as needed? What would they like to see the group do, what issues discussed or presented? Based on members' needs, interests, and responses, make plans for your next meeting.

5.) Future Meetings. Other considerations for future meetings may be the following:

  • Defining the purpose of the group to provide education and support? This may be added to any flyer or brochure you have for the group. Include guidelines or agenda you have for your meetings.
  • Membership. Who can attend meetings? Should regular membership be limited to those with sarcoidosis with an associate membership for spouses, other family members and friends?
  • Meeting format. What combination of discussion time, education, business meeting, service planning, socializing, etc. suits your group best? What guidelines might you use to assure that discussion be nonjudgemental, confidential and informative? Topics can be selected or guest speakers invited. A good discussion group size is seven to fifteen. As your meeting grows larger, consider breaking down into smaller groups for discussion.
  • Phone network. Self-help groups should provide an atmosphere of caring, sharing and support when needed. Many groups encourage the exchange of telephone numbers to provide help over the phone whenever it is needed.
  • Use of professionals. Consider using professionals as speakers, advisors, consultants to your groups, and sources of continued referrals.
  • Projects. Always begin with small projects. Rejoice and pat yourselves on the back when you succeed with these first projects, like having a flyer or a brochure printed, or developing a library or service project. Then, with time, work your way up to the more difficult tasks.

6.) Lastly, expect your group to experience "Up's and Down's" in terms of attendance and enthusiasm. Such fluctuations are natural and to be expected. You may want to consider joining or forming a coalition or a group of leaders, for periodic mutual support and the sharing of program ideas and successes.


A special thank you to Brenda Harris and Sandra Conroy for outlining these fundamental steps for setting up a support group!

Sandra Conroy is the founder and President of the
National Sarcoidosis Resource Center (NSRC)
She can be reached at:
P.O. Box 1593
Piscataway, NJ 08855-1593
(732) 699-0733 Fax: (732) 699-0882

Sandra Conroy is the author of the
Sarcoidosis Resource Guide And Directory ©
To find out
more about setting up a support group or her guide visit the National Sarcoidosis Resource Center (NSRC)

Brenda Harris creator of the
"Let’s Breath Sarcoidosis Support Group" meets at:
Rush North Shore Medical Center
9600 Gross Pointe Road
Skokie, IL
(847) 328-9410

Brenda also is the facilitator of the AOL online chat groups on Thursdays and Sundays.
Please contact her for details at:

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