“HNF does a great job of educating our readers – Neurologists, Primary Care Physicians, Nurse Practitioners/Physician Assistants, Genetic Counselors and Geneticists – about CMT.”
Even though CMT is one of the most common rare diseases, it is often misdiagnosed or under diagnosed. Part of the problem is that the first symptoms of CMT (foot drop and a high-stepped gait, curled toes, frequent tripping or falling, or loss of muscle) can often be misdiagnosed as another disorder, including Multiple Sclerosis (MS) (Dr. Charcot also identified MS as well), or other peripheral neuropathies.
It is important that neurologists are made aware of the various signs and symptoms of CMT, even though they may seem insignificant (e.g., a child having trouble tying her shoelaces, frequent tripping or problems with balance). HNF created a Continuing Medical Education (CME) course for this purpose.
In addition, HNF works closely with Neurology Reviews and our annual Rare Neurological Disease Special Report, to provide neurologists and other healthcare providers with a wealth of valuable resources, the latest clinical research, announcements of clinical trials, and scientific information all with the goal of shortening the time to diagnosis and improving the quality of life for patients and their family members dealing with CMT. Through the surveys conducted by HNF, it was discovered that 65% of patients with CMT suffer from pain. This was important information that was distributed via Neurology Reviews.
Over the last 6 years Neurology Reviews has conducted a Readership Survey post-publication of our annual Rare Neurological Disease Special Report that is developed in collaboration with NORD, in which HNF is also an advertiser. These Readership Surveys help us to understand what articles our readers are engaged in, how they want to learn about rare diseases, where they go for information about rare diseases, and what rare diseases they want to learn more about. CMT has consistently been ranked as one of the top rare diseases they are most interested in and want to learn more about.
In addition, in the April 2020 Readership Survey, we also included an Addendum Question developed by HNF to be included in the Readership Survey and sent to neurologists, medical geneticists and genetic counselors. See the summary of results, below.
HNF provides a wonderful and unique feeling of community, inspiration and advice on how to improve quality of life, physical fitness and wellness, and the latest research and support for the patients, their families and their caregivers. Our neurologists, and other healthcare providers treating these patients, can then share with their colleagues and their patients.
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