Blog article by Rettsyndrome.org:

June 4, 2019

Rettsyndrome.org hosted a clinical Learning Collaborative on May 8 and 9 in Denver. The Learning Collaborative is made up of physicians and clinicians from Rett clinics around the country who volunteered their time to share ideas in the spirit of advancing care for Rett families, and to create a universal standard of excellence across all Rett clinics.

Dr. Timothy Benke, Rettsyndrome.org’s Medical Advisor and Director of the Rett Clinic at Colorado Children’s Hospital, invited physicians and clinicians to observe appointments at the multidisciplinary Rett clinic at the Children’s Hospital Colorado (CHC). The CHC clinic sees Rett patients for new and follow-up appointments once a month. During an appointment, Rett families have the opportunity to meet with up to 15 specialists who provide care in the multidisciplinary clinic. Families stay in one comfortable location, while the sub-specialists come to them in their exam room. Members of Learning Collaborative had the opportunity to ask questions, share knowledge, and identify opportunities for innovation and improvement within their respective clinics. Many from the group commented on CHC’s ideal clinic space and were impressed by the organization and flow of the clinic provided by nurse coordinator, Tristen Dinkel, RN.

Samantha Brant, RSO Family & Community Engagement Manager, toured the Rett clinic and participated in the Learning Collaborative. “It was wonderful to meet families in person,” she shared, “and it was also incredible to see clinicians and physicians who have dedicated their lives to Rett coming to share ideas and learn from one another. It was a great picture of community unity. As a parent, Rett syndrome is our assigned mission. We didn’t get the choice, but these clinicians did. I hold this very close to my heart.”

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