PPMD is pleased to host the first Transforming Duchenne Care Meeting, June 27-28, 2012, immediately preceding the Annual Connect Conference in Fort Lauderdale. The goal of the Transforming Duchenne Care Meeting is to bring together leadership from top medical institutions, neuromuscular experts, and patient representatives to discuss, in an open forum, the ideal configuration, features, services, and structure of state-of-the-art family centered care for patients with Duchenne.
This meeting comes out of a need to identify and define benchmarks for best practices and standards of care in Duchenne. Attendees at the meeting will include representatives from any medical institution interested in working to improve care delivery models for patients with Duchenne. Each representative was asked to bring a senior member of the hospital leadership, such as the CEO, Chair of Pediatrics, or Chair of Neurology.
In today's press release, PPMD President and CEO, Pat Furlong, is quoted as saying:
“The idea of a Transforming Duchenne Care Meeting is long overdue in this community. We are so pleased to be assembling this incredible group of people and hope to take standardized care in Duchenne to the next level. We have requested that the Duchenne care provider at the participating institutions brings a senior member of their hospital so that the administration can fully understand the need for improved care and can also help determine what is feasible from their point of view. Ending Duchenne is a team effort and we are grateful to have such amazing thought leaders on our team.”
“This meeting is a great opportunity to discuss Duchenne care in depth and figure out how we can best take care of this patient population. By continuing to create best practices in Duchenne care, we are giving more patients in more parts of the country an opportunity to live healthier lives. We applaud Pat and PPMD for continuing to see gaps in the Duchenne space and taking actions that will have long term effects.”
Will Nolan, Communications Director
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