About the Patient-Centered Charcot-Marie-Tooth Summit

by | Jun 15, 2016 | 0 comments

SummitThe goal of the Patient-Centered Charcot-Marie-Tooth Summit will be to expand the role of patients, caregivers and other stakeholders to identify patient-centered measurement tools that are fundamental to research and clinical practice by conducting workshops and panels led by patients and stakeholders. Patients will have the chance to hear the latest in research developments, participate in panel discussions with clinicians, and voice their needs and priorities in regards to CMT research and treatments.

The Summit will be focused on innovative content and bring together top leaders in industry, research, and treatment and give a voice to the patient.

The objectives will be to:

  • Educate the participants on the state-of-the-art PCOR regarding Inherited Peripheral Neuropathies (IPNs)
  • Serve as a forum for exchange of ideas particularly as they relate to patient outcomes and barriers to implementation
  • Illuminate the critical role that patient involvement and PCOR has for advancing IPN understanding and treatment
  • Foster development of partnerships between researchers and patients
  • Posters and presentations will describe key science performed in field 
  • Impactful presentations on innovative technology, public policy, and the importance of disease-state awareness to support PCOR and partnerships

We encourage all CMT patients and stakeholders to attend what is surely to be a landmark event.


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Summit Panelist Spotlight: Estela Lugo

A long-time member of the CMT community, HNF enlisted Estela to become a moderator for our CMT-Connect™ workshops. She has generously committed her time to help lead and teach other CMT patients in her community.

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