The HNF team was thrilled to accept an invitation to present at the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) Annual Conference, held October 10 to 13 in Washington, D.C. The session focused on patient-focused research and how healthcare providers can become part of the research continuum in therapy development.

The AANEM is a professional membership nonprofit with a network of more than 4,000 physician and non-physician members worldwide, dedicated to improving patient care for neuromuscular diseases. The annual meeting draws more than 900 neurologists, physical medicine and rehabilitation physicians, neuromuscular specialists, and other healthcare professionals. HNF hosted a 90-minute educational session devoted entirely to CMT.

The agenda included:

  • The importance of Patient Reported Outcomes in CMT patient care and therapy development
  • Use of new technology for an international, observational, real-world data study exploring the impact of CMT on patients
  • Highlights from the “Voice of the Patient” weekend overview
  • The importance of early and accurate diagnosis
  • New and affordable genetic testing options for the CMT patient community, presented by leaders in genetic testing
  • CMT-validated clinical testing scales to deepen understanding of patients’ conditions and enhance treatment options
  • Tips from leading CMT experts
  • Guidance on transitioning pediatric patients to adult neurologists and other healthcare providers

HNF’s resources were also highlighted to help neuromuscular clinicians connect with other healthcare providers and access qualified referral resources for their patients. This integrated approach aims to deliver more comprehensive care for the CMT community.

In collaboration with AANEM, HNF developed a CMT Assessment Test and a CME-accredited course to support this multi-faceted approach to patient care. Stay tuned for HNF and AANEM’s 2019 initiative announcement.