Lupus Support Groups

 

There are many lupus and Sjogren’s syndrome support groups around Australia, in major cities and in regional areas.

If you can’t find a support group meeting close to you, then perhaps you might consider starting and running a small, informal support group in your local area. Maybe in your area, lupus is not as well-known as it is in other areas. Perhaps you just need a support group of people that can identify with what you are going through.

Whatever the reason, sometimes starting your own support or advocacy group may be needed. There are many ways to spread awareness and garner support. One way is to start your own support or advocacy group. This may sound scary, but it may help you on your lupus journey.

For More Information and Detailed Procedures

If you wish to startup a support group please contact the Lupus Association of NSW Inc on 02 9878 6055 or email us and we will be more than happy to provide you with more detailed information regarding your obligations in undertaking this process.

In the meantime here is some background information you may like to consider.

Objectives of the Support Group

  • Support groups run as an adjunct to specialist and general medical professional care;
  • They provide social, emotional and educational support to people with Systemic Lupus Erythematosus (SLE) and related Connective Tissue Diseases (CTD), and their carers, by sharing experiences and knowledge that will enable them to improve their quality of life, and to take control of their personal development.

Ways to start your own support or advocacy group

  1. Identify what type of group you want to start. Make sure you identify what you would like to focus on: support, advocacy, or awareness. This will narrow it all down and bring focus to your goals.
  2. Research if there are other groups in your area. Look to make sure you aren’t duplicating something that is being done. Understand the unmet need in your area so you can reach those that require assistance.
  3. Speak to other organizers in your area. Talk to others to see how they did it or if they can help you. Find out how they can assist or if you can collaborate.
  4. Find others who want to help with your cause. This could be other lupus warriors or supporters who can spread the word. Check around to see how you can garner help.
  5. Decide how you will meet. For instance, you may meet online or in person. Contact local libraries and community rooms that are centrally located for in-person meetings. Then, find the most cost-effective way for online meetings like Zoom or other online meeting programs.
  6. Compute any start-up costs. Find out if there are any start-up costs. Will you need to pay for space, food, and prizes?
  7. Choose a convenient date and time for the meeting. Choose a time that works for you, and those who you have identified will be a part of the meeting.
  8. Prepare informative materials. Set your first meeting up with a theme and provide information or speakers within that theme for the meeting.
  9. Attend other organizational events. It’s important to network and see if others would be interested in attending or know others that would like to attend. As a result, you can get more supporters for your cause.
  10. Finally, have a Grand Opening. Create fliers and ask others to spread the word about your group. And get ready for the big day.