How to Start a Face-to Face Vitiligo Support Group
A support group can be an important resource because it can help people who have vitiligo deal with the sense of isolation that many feel and it gives them a great opportunity to get out, meet other people, and widen their circle of support. A vitiligo support group can also be an important resource for sharing common experiences and resources.
When I imagine a support group, I usually think of a group of people sitting in a circle of chairs talking, but your support group can be so much more. It doesn’t always have to be a serious occasion. There are so many ways to socialize AND give/receive support. You can play board games, talk about books or movies, organize a fund-raising event for your area, or plan a fun outing for another time in that month…you get the idea. Make it fun!
If you start vitiligo support group I will list it for free on this site (if you like) so that people can find out about it.
Where do you begin?
1. Find a centrally located meeting place. Churches or Synagogues often let support groups meet in their basements. You can also try restaurants, Coffee shops, hospitals, libraries, community centers, schools or universities. You may have to call a lot of places because many groups use these spaces, but if you keep at it you shouldn’t have too much trouble finding a meeting space. If possible, find a place with free or inexpensive parking in a well-lit area.
Some of these places may require a small ‘rent’ of a few dollars a week or a month. If so, these places will usually lower the rent or even drop it to zero if you explain that you are starting a new group and won’t have a lot of people in the beginning.
The recommended way to pay for a room ‘rental’ is to take a collection at every meeting (pass the hat or the basket and people throw in a dollar or two or whatever they can). This usually covers the rent. Important– Always make it clear that nobody has to donate if they don’t want to; there should be no pressure about donations.
2. Set a meeting time and keep to it faithfully. I suggest that you meet monthly on approximately the same day and time. If the date and time varies too much people will get confused about whether or not your meeting is ‘on’ or not this time around.
Be sure to be on time for the meeting and stay for the whole meeting time, even if no one else comes in the beginning. (Sometimes a new person will get lost on their first visit to your group and they might show up late– even in the last 5 minutes of the meeting, so just be patient and wait through the whole meeting time so that you can greet all newcomers and make them feel at home).
This will help your group to grow and help it meet that critical mass where it becomes a self-perpetuating support group, no longer dependent on you.
How will you tell others?
1. Advertise the support group meeting on an ongoing basis. **Very Important** Support groups rarely last very long by word of mouth alone. A regular ad in a newspaper is essential to the success of a local (face-to-face support group). However the good news is you can often get this advertising for free or cheap. First, try calling the ‘Calendar’ department of your local Newspapers, they often list support groups for free.
2. Contact your local media and ask if you can submit a public service announcement (PSA). PSAs are generally free of charge and should contain the group’s purpose, meeting time, and location.
3. Print up flyers and take them to your local dermatologist offices, doctor offices, and hospitals, and ask them to recommend your group to anyone with vitiligo who visits them. Be sure to set up your internet pages first so that contact information can be included on the flyer.
4. Create a Facebook page and a Twitter account for your support group. This will make it simple for you to set up meeting dates, disseminate the information to members (friends), and best of all you can post notes and photos about the meet-up.
5. Lastly, go to http//meetup.com and create a vitiligo support group for your area; you’ll be amazed at how many people you will reach!
1. Identify and Respond to the Felt Needs of Your Members.
2. If your group is new and doesn’t follow a set program for helping members help one another, always remember to plan your groups’ activities and goals based upon the expressed needs of your members. Share your vision.
3. At the very first meeting, go “round-robin” permitting each member an opportunity to say what they would like to see the group do. Then discuss these needs and come to a consensus as to which ones you will address first. Don’t make the same mistake that some professionals make in professionally-run groups–of thinking that you know the members’ needs without ever asking them.
4. Remember to regularly ask your new members about their needs, and what they think the group might do to meet those needs. Similarly, be sure to avoid the pitfall of the core group members possible becoming a clique. The welcoming of new people into the group is a process that continues well beyond welcoming them at the door.
5. Help between meetings. Many groups encourage the exchange of telephone numbers or a telephone list to provide members with help over the phone when it is needed between meetings. Older groups have a buddy system that pairs newcomers with veteran members.
If you plan on starting a support group, please feel free to contact me if you need any help 🙂