Atypical Hemolytic Uremic Syndrome (aHUS) Regional Meetings
NORD regularly hosts two day regional meetings for aHUS patients. The pre-meeting reception, which is held on Friday evening, is an important part of the event. It gives attendees an opportunity to get to know one another before the “more formal” meeting with the physician expert on Saturday.
Saturday starts, with breakfast and then a two hour presentation from a physician expert. The presentation by the physician expert is the central point of the meeting, and the interactive dialogue/Q&A has been proven to be very valuable to attendees. After lunch, the Foundation for Children with aHUS will present on the available resources they provide for patients and caregivers.
Patients and caregivers are separated into different breakout groups in order to discuss their respective issues in a confidential and supportive setting. These sessions are facilitated by healthcare professionals (social workers or clinical psychologists) with experience in health/rare disease psychology and/or counseling. These breakouts provide a private setting to share common concerns, fears and challenges and to learn from one another. There is also time to discuss some of the issues associated with the disease, such as the sense of isolation, challenges of being a caregiver of a patient, chronic disease management, coping strategies, etc. The facilitator is there to help participants develop coping skills and assist in dealing with the challenges of their disease.
Each meeting provides a highly-interactive setting for patients to learn and to be better prepared to deal with the challenges of their disease. But most importantly all participants leave as a member of a supportive community. Each patient is provided a travel stipend and one night accommodations.
If you have any questions about these meetings please contact us here.