We’re Here To Help: The Hereditary Neuropathy Foundation’s Healthcare Provider Directory

by | Dec 14, 2015 | 14 comments

The Hereditary Neuropathy Foundation is thrilled to announce the launch of the first online health care provider directory that has ever been offered to this community to include comprehensive testing to certify health care professionals (HCPs).

HNF’s Health Care Provider Directory enables patients to research and find the HCPs who address the unique needs and considerations of those living with Charcot-MarieTooth (CMT) and other inherited neuropathies (INs). Participating HCPs can utilize the directory to find the information and resources to better serve the CMT and IN community.

Why did we decide to launch this directory now?

We are at a critical point in our understanding of these rare diseases. While the collaboration among academia, government, and industry has made great strides in developing advanced diagnostics and treatments for CMT and INs, there are still no cures.

Without a cure, patients of inherited neuropathies require a multidisciplinary approach for managing symptoms and maintaining quality of life. A CMT patient’s functionality, quality of life, and disease management depend on working with a team of HCPs, such as neurologists, physical therapists, pain specialists, orthotists, and other specialists.

Finding those HCPs has been especially challenging for the inherited neuropathy community. There hasn’t been a reliable resource available to find local HCPs who are familiar with the complexities of treating the whole person with CMT or INs.

Until now.

Learn more on this topic

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Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.

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    After many years of having difficulty walking, my nephew has been recently diagnosed with CMT x1. I have been researching orthopoedic surgeons near him, in NY and have had much difficulty finding anyone. Please send any info.

    • courtney


      Where in NY do you live? Contact us offline at [email protected].

      Thank you!


    Hello. I am looking for information regarding orthopoedic surgeons in the NY area or surrounding states. After many years of having difficulty walking, my nephew was recently diagnosed with CMT x1 and has been using braces for a while without improvement. I am trying to find a surgeon close to him and have experienced much difficulty. Please send any info. Thanks.

  3. John

    I live In Missoula, MT. Any help nearby?

  4. Margaret

    Where can I find this directory?

  5. Susan Jackson-Dowd

    I have CMT and need a neurologist in Louisville, Kentucky, who knows something about the condition. Any advice would be appreciated.

  6. Marsha Mantia

    I need a local provider familiar with CMT as soon as possible in the Lexington, KY area.

    • courtney

      Hi Marsha,

      Please check our HCP Directory weekly as we are adding new HCP’s.

  7. Ruthie Jackson

    Can Neuropathy be cured

    • Allison Moore

      Hi Ruthie, thanks for the post. It is important to understand what is causing the neuropathy. Certain neuropathies have treatments that may approve the symptoms.


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