Caregivers Ad Board Brings Insight to Rare Disease Families

Alan Gilstrap | August 20, 2013

Where do caregivers go to reenergize? How is caregiving for people with rare diseases different from other diseases? Where do caregivers go for information and support? These are some of the questions we posed to 30 rare disease caregivers from around the world recently at Genzyme Center in Cambridge. The meeting, which was Genzyme’s first global Rare Disease Caregiver Advisory Board gathering, not only provided us with great insights into the needs of this inspiring community, but it left us all feeling extremely honored and privileged to have been a part of it. 

The goal of the meeting was to discuss the challenges of caregiving, identify possible resources for caregivers and uncover educational gaps that may exist for this important community. We benefitted from the expertise and insights of our partner organization, the Caregiver Action Network (C.A.N.), who helped put the rare disease caregiving role into the broader context of caregiving overall. As C.A.N.’s Executive Director John Schall said, “For the vast majority of the population, it is not a question of whether we will one day become a caregiver, the question is when.” Though that may be true, he acknowledged that the rare disease community in particular faces exceptional hurdles in terms of the lack of available support networks, broad disease awareness and resources. In addition, scarce resources often mean that patient organizations must focus their support programs on the needs of patients while the needs of the caregiver go unaddressed. 

Caregivers from the Fabry, HoFH, Gaucher, MPS, Niemann-Pick B, Pompe, and Tay-Sachs patient communities participated in the two-day meeting. In addition to providing insights into the needs of the community, it also created an atmosphere where participants could connect with one another through the common aspects of their journey. After the advisory board, many of the participants spoke about the impact that this event had on them. One of the participants summarized their experience in this way: “This was a fantastic experience! I learned so much and met truly wonderful, interesting and admirable people. I found the small discussion groups so interesting, and can't say enough about how impressed I am with C.A.N. and the work they do! Each part of the conference was great.”
We would like to hear from you. What support does your organization give to the caregivers for the members of your organization? What would caregiver programs look like, if resources weren’t limited?


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