Wednesday, February 10, 2016

Meet new SAB member Maya Doyle

1. How did you get involved with the XLH Network and its Scientific Advisory Board?
I met Carolyn Maccica during my first week teaching in the Department of Social Work at Quinnipiac.  A colleague knew that I had done my doctoral research with a rare disease group - cystinosis - whose patients experience rickets in childhood. One of the patients I know well has written a book called Rollerskating with Rickets (which I highly recommended) that is full of wonderful essays about her experience living with a rare condition.  That book was sitting on my desk when Carolyn walked into my office for the first time, and we started to trade notes on our disease specialties. We immediately started to talk about the XLH study she was working on, and I immediately wanted to include a qualitative piece about the experience of those who are living with XLH as adults.

2. What's your "super power" -- the special skill, knowledge or experience that you bring to the SAB?While most of my clinical experience as a social worker has been in pediatrics, my research interests are in the psychosocial impact of chronic and rare disease across the lifespan for both patients and families, and particularly the transition to adulthood and adult-oriented care for those diagnosed in childhood. I am a qualitative researcher by training, so my goal is always to bring the voice of patients and families back to the clinicians , researchers, foundations and industry that interact with them.

3. What XLH project are  you working on now that you're particularly enthusiastic about?I am in the process of analyzing the data from interviews and surveys that were conducted with adults with XLH at Quinnipiac in 2015, and look forward to sharing those findings with the XLH community!

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