In collaboration with the AHC Foundation, Dr. Suzanne DeBrosse, Dr. Kevin Ess, Dr. Ken Silver, Dr Marcio Sotero, Dr. Kathryn J. Swoboda and Dr. Sho Yano have gathered together to meet with AHC families and interested healthcare professionals on Thursday June 21st. We will dedicate the morning to have informal individualized consultation sections between families and physicians. In the afternoon, an open Question and Answers (Q&A) session will be held. The objective of this session is to share information and answer specific questions  regarding the care of AHC patients.

The purpose of the individualized consultation section is to provide an opportunity for families to meet and discuss care strategies tailored to the individual needs of each family. These visits are not clinical evaluations and formal consultation notes will not be provided nor documented during the meeting. the intent of the visit is to provide you with some recommendations to discuss with your neurologist or primary care physician once you return home. Some consultations may be focused on genetics counseling, others may focus on concerns about new symptoms your family member may be experiencing, or simply seek our opinion about whether the current care you are receiving seems appropriate.

To better accommodate your needs in an efficient manner, you will be asked to provide a concise medical history summary and two primary questions you would like to address, one for the individualized consultation section and one for the Q&A section. Informal individualized consultations would last approximately 30 minutes for each family. If you are interested in scheduling an appointment with one of the providers listed above, please contact Gisel Dannehl at gdannehl@mgh.harvard.edu or Helen (Jin Yun) Chen at jin.chen@mgh.harvard.edu.

No information collected during the meeting will be stored unless you have previously provided permission for us to record such data. However, either before or during the visit, we may ask you if you’d be willing to have us contact you in the future regarding more formal participation in any of the current ongoing studies in AHC.