The Mastocytosis Society: Home of the New Mastocytosis Web site

Mastocytosis Support Groups

| Find a support group | Patient contacts | Upcoming meetings |

How to form a support group

If you cannot find a support group in your area, starting a new support group is easy! All you really need is list of other patients and caregivers in your area and a time and place to meet!

Here are some tips:

Give each attendee detailed directions and your contact information in case they get lost
Ask ahead of time if any of the attendees have an allergy or a fear of any pets you may have
Choose a location that has a kitchen area, bathroom, an area for sitting, and ample parking (i.e. a private home, a church, etc.)
It is highly recommended to use a location that has air conditioning during summer months
Meetings can take place anytime of year and as often as your group deems necessary
Most meetings begin around noontime; the length of the meeting varies depending on how the guests feel that day
Dress is informal
Generally lunch is served potluck style - guests are asked to bring a dish with them which lists the ingredients for those members who might have food sensitivies

After lunch you can begin the meeting - oftentimes a discussion will naturally ensue! If not, a great strategy to break the ice is to sit in a circle and go around the room one-by-one and introduce yourself, tell what you were diagnosed with and when, what your symptoms are, and any questions or concerns you may have. You'll be amazed at how quickly a discussion takes place!

Make it clear to everyone in attendance that everything discussed during the meeting is confidential. This will allow a more relaxed, supportive environment.

Also, if there are enough attendees, you can opt to have a separate caregiver breakout group in another room.

If you are interested in forming a support group in your area, please contact a board member.