I love my job, but the best part of my job is connecting rare disease patients.
I was hired in June of 2011 to manage RareConnect- NORD’s global, online communities project with EURORDIS. About eight months into my position I was asked to assist a colleague with a paroxysmal nocturnal hemoglobinuria (PNH) meeting in San Antonio.
I had the pleasure of spending the weekend with a group of PNH patients and their caregivers. It was incredible to witness the abundance of support exchanged. Patients diagnosed with this incredibly rare disease were no longer geographically segmented- they were face to face with someone just like them. The burden of being so isolated seemed lifted as patients discussed their journey to diagnosis, infusions, favorite physicians, and psycho-social issues that stem from having the disease. For many of the patients, for the first time in their lives they could connect with another PNH patient. I saw firsthand the benefit of face-to-face networking for the rare disease patient.
With that said, I was thrilled to learn in early 2013 that Alexion Pharmaceuticals would provide a second educational grant to NORD to run similar meetings for atypical hemolytic uremic syndrome patients and caregivers. Since I was already familiar with the aHUS community (we have a RareConnect community for aHUS and I work closely with the Foundation) I was elected program manager. I was thrilled.
We had our first regional aHUS patient meeting in Atlanta in late February and our second meeting in New Jersey just this past April.
These regional patient meetings are two days events. The pre-meeting reception, which is held on Friday evening, is an important part of the event. It gives the attendees an opportunity to get to know one another before they are in the “more formal” meeting with the physician expert.
Saturday starts early, 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. The Foundation for Children with aHUS follows after lunch with a short presentation on available resources for patients and caregivers.
To support different groups, we designed patient meetings to include breakouts for the patient and caregiver groups separately, so they can discuss their respective issues in a confidential setting. These breakouts are always 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 psycho-social issues that have been identified, such as sense of isolation challenges of being an adult or a caregiver of an aHUS patient, chronic disease management, coping strategies, etc. The facilitator is there to help them develop coping skills and assist in dealing with the challenges of their disease.
Through these two meetings in 2013 for aHUS we have helped connect over 20 families! 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 they leave as a member of a supportive community.
As a rare disease patient, have you ever met someone else with your disease? What was the experience like for you?
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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