Patient Advocacy Summit 2014: Transition and Transformation – Rare Disease in Adolescence and Adulthood

September 5, 2014

Produced as a part of our RARE Toolkit series by the same name, this session features advice and guidance from Maya Doyle,  Senior Pediatric Social Worker of Children’s Hospital at Montefiore. For those caregivers working with young adults, this session will discuss the transition into adulthood with rare disease and cover topics such as:

  • Changes in health status
  • Healthcare systems
  • Education, work and living arrangements
  • Family and relationships

And how they can be organized and managed to accommodate the challenges of unstable health. The conversation will  tackle transformations–which have more to do with patient identity and how one can make educated decisions about their own healthcare and homelike.

This session will provide insights, ideas and plentiful resources to help caregivers, patients and their entire family negotiate this exciting and challenging time.

Session Moderator

Maya Doyle, PhD

Senior Pediatric Social Worker, Children’s Hospital at Montefiore

Screen Shot 2014-09-04 at 12.11.01 PMDr. Maya Doyle is an Assistant Professor of Social Work at Quinnipiac University in Connecticut. In 2013, she completed her doctoral work, a qualitative study of the experience of emerging adults and their families living with cystinosis, a rare metabolic disorder. She is currently undertaking research regarding the transition of pediatric patients to adult-oriented care. Since 1999, she has been the senior social worker in Pediatric Nephrology at the Children’s Hospital at Montefiore in New York, and continues to coordinate the Ruth Gottscho Dialysis and Children’s Kidney program at Frost Valley YMCA, a mainstream summer camp program for children with kidney disease.


Can’t attend in person? You can’t afford to miss this! Our new Livestream component will allow up to 5,000 interested advocates from around the globe to attend virtually. The event will be broadcast live with opportunities for patients to participate from afar using social media, including twitter and Facebook. Follow using #2014GGSummit

To view the full schedule of events click here.

To register to attend the summit in person, click here.

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