IG Living Blog

Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 23. October 2014

Starting a Patient Support Group: A Rewarding Experience

By Abbie Cornett


As a patient advocate, I have worked with patients and patient support groups, attended meetings, worked on legislation, studied policy and written articles. But, this year, I was given the opportunity to do something that directly affects the lives of patients and their caregivers in a new and direct way.

Dr. Roger Kobayashi, clinical professor of pediatrics at the UCLA School of Medicine in Los Angeles, Calif., and a practicing immunologist in the state of Nebraska, as well as an old friend and ally of mine, asked me to help start a patient support group for families of children who have been diagnosed with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), which is a subset of pediatric acute-onset neuropsychiatric syndrome (PANS).

PANS/PANDAS has only been recognized in the past few years as a disease and has been the subject of much debate. This lack of information, coupled with the profound symptoms exhibited by the affected children, can be devastating for the families. As a physician who has been very active for years on issues that affect patient access to care and policy issues, Dr. Kobayashi wanted to find a way to offer support and education for the families of these patients.

We at IG Living thought his idea was a wonderful way to support children and their families and agreed to help form the Midwest PANS/PANDAS support group through I Give for Kids, our charitable division. With tremendous support from Dr. Kobayashi, his staff and the physicians at Boys Town Hospital, the first meeting was held October 18.

Even though I have attended many events like this in the past, I never really understood all of the hard work and planning that goes into organizing a patient support group. I can honestly say that every minute I spent working on it was worth the effort. With more than 80 people attending from four states, the meeting was one of the most rewarding experiences of my life. I was able to talk to the parents one-on-one and got to really understand their needs and concerns. I came away from the meeting with a lot of new ideas and a renewed sense of purpose. I can only hope that this is also a new beginning for me; I would love to become directly involved in starting new patient organizations to support those living with chronic illness.

Have you been involved in the start of a new patient support group? If so, I'd love to hear about your experiences.


Comments (1) -

9:44 AM on Friday, October 24, 2014

My was was diagnosed with PANS, And he is doing much better now. I think this is a wonderful idea for the affected families. Looking forward to read about new findings and researches.

Add comment

Before submitting your comment, please review the IG Living privacy policy.

If you prefer to submit your comment privately, please email Abbie Cornett ACornett@IGLiving.com