The Hereditary Neuropathy Foundation (HNF) has a new initiative aimed at identifying expert Health Care Providers (HCP) for the CharcotMarie-Tooth (CMT) community. We are creating an innovative online HCP Directory that will enable people with CMT and their family members to find clinicians familiar with treating CMT in their local communities. The Directory will include a range of health care professionals who treat the whole person with CMT— neurologists, physical therapists, podiatrists, and more. We are looking forward to seeing this directory grow and expand over time as the community has a chance to learn about it and interact with it.
Clinicians who join the Directory will have access to additional tools to help care for their patients. The Directory will link them to standard of care guidelines, leading research, and cutting edge information regarding the CMT community. As HNF builds out its CMT health care professional education and accreditation coursework, in the future health care providers who have completed these courses will be identified with a special logo on the directory to help patients find providers with this additional accreditation. In addition to linking clinicians and the CMT patient community with one another, we will be asking our HCP Directory professionals to encourage their patients to join Global Registry for Inherited Neuropathies (GRIN) so they can collaborate in the research process by accelerating therapy development for the CMT community.
To launch this exciting initiative, this past spring HNF participated in the Neurological Rare Disease Special Report that was published as a supplement to Neurology Reviews and is now available as a digital version under the “Education” tab on our website. HNF developed a two-paged advertorial describing the diagnosis and treatment for CMT (p. 8-9). The Neurological Rare Disease Special Report was mailed to over 24,000 clinicians, including 20,000 neurologists and 4,000 primary care physicians in the U.S. In addition, this special report will also be distributed from the Neurology Reviews exhibit booth at over 15 major industry conferences.
One such conference where we recently shared news of the Directory was the recent biennial meeting of the Peripheral Nerve Society in Quebec, Canada, which was attended by investigators and clinicians from around the world. HNF and the Directory initiative were extremely well received, with professionals from a range of countries inquiring about participation and expressing their eagerness to share news of the initiative with their patients.
Our goal is to continue to raise disease awareness, inform clinicians of how to recognize CMT and accurately diagnose it using new and improving diagnostic tools, and finally inform them of potential future treatment options currently under investigation. We will continue to highlight CMT through similar mechanisms and peer reviewed scientific publications.
For Medical Professionals: https://www.hnf-cure.org/cmtprovider/
For Patients: https://www.hnf-cure.org/provider-directory/