Finding Experts Health Care Providers for Charcot-Marie-Tooth

by | Mar 6, 2015 | 58 comments

rare_disease_report_imageHNF has a new initiative aimed at identifying expert Health Care Providers (HCP) for the CMT community. We are creating an innovative HCP Directory which provides these clinicians with additional tools to care for their patients. We will provide them with the best standard of practice guidelines, as well as verifying them as a provider to ensure quality diagnosis and treatment to the CMT Community.

Once endorsed by HNF, we will provide these HCP’s with a special logo to add to their website, a link to take a free continuing medical education course and a special Essential Guide Booklet with all they need to know about CMT. A secondary goal of creating the HCP Directory is 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, HNF recently participated in the Neurological Rare Disease Special Report that was published as a supplement to Neurology Reviews and now available as a digital version under the “Education” tab.

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. Our goal is to continue to raise disease awareness, inform clinicians of how to recognize CMT, accurately diagnose and finally inform them of future potential treatment options. We will continue to highlight CMT through similar mechanisms and peer reviewed publications.

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Taking Matters Into Your Own Hands

Do you have a rare form of CMT?

We were contacted recently from a patient with CMT2D who was looking for advice on how to make a difference. Our recommendations for all people with an ultra-rare form of CMT who want to get involved:

Now GRIN is Accessible in 141 Different Languages!

Now GRIN is Accessible in 141 Different Languages!

The Global Registry for Inherited Neuropathies (GRIN) has implemented Google Translate. Why did we choose Google? Because Google is leading the way in teaching computers how to interpret meaning, avoiding the traditional method of decoding language.

Accelerating Patient Access to Investigational Drugs in 2015

Accelerating Patient Access to Investigational Drugs in 2015

Currently the FDA is working to update the process for physicians applying for accelerated patient access to investigational drugs, while the drug or biological product is being tested in clinical trials. This will also be important for the CMT community as clinical trials for this disease are being launched.

Do You Have Charcot-Marie-Tooth Type 4 (CMT4)? – We Need Your Help

Autosomal recessive demyelinating CMT4 patients present with earlyonset and slowly progressing symptoms. These include progressive distally accentuated weakness and atrophy of muscles in the lower limbs. In addition, patients may have weakness and atrophy of hands, sensory loss and pes cavus (high-arched feet), and walking difficulties. Further information on CMT4 can be found at Orphanet.

Hot Off the Press – Potential Treatment for CMT1A

Two recent publications from Pharnext describe a novel synergistic combination of 3 drugs (baclofen, naltrexone and sorbitol) and its effect on CMT1A both in the lab and in a phase II clinical trial. These 3 drugs already approved but for unrelated conditions, are combined at new optimal lower doses and under a new formulation. This novel potential therapeutic is called PXT-3003.

Support CMT Therapeutic Alliance

HNF has entered into a joint venture – the CMT Therapeutic Alliance – with a unique non profit organization (BioPontis Alliance for Rare Diseases) that brings professional drug discovery capabilities to translate our research results into potential treatments.

Scientific Advisory Board Meeting

Scientific Advisory Board Meeting

On the 7th of November we convened our scientific advisory board meeting at the HNF offices in NY. We have written a detailed review that has been published and captures all of the discussion and make this freely available to the scientific community.

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  1. Laura Higgins

    I just recently found out I have CMT type 2.I had a blood genetic test done because I thought it was to much of a coincidence that so many generations of people in my family had strange nerve issues. I work in the healthcare field and not only have healthcare workers never heard of CMT there seems to be no such thing as a CMT specialist anywhere. I live near Seattle, WA. So when you find out you and your family have it there is no help anywhere.

  2. Rhonda Reece

    My son had Charcot disease of the feet. Had to have be
    Low knee amputation. He was 37 when it was finally diagnosed in ky. He passed away @ age 43 with a heart atttack. I’m so worried about my grand children. So far, they have not been diagnosed with it. However very little know about cmt in ky. Where is a good place to go near ky. I am in severe pain at age 69.. my son had severe neuropathy. He was not diabetic. I think I have symptoms of cmt too.m Dr says it’s severe arthritis. I hsve neuropathy hammer toes. Severe hip back pain. Feet legs . Ty

  3. Angela Mitchell

    I have CMT was diagnosed at age 6 had my first surgery at Stanford’s children’s hospital by Dr Bleck wonderful experience. Lived a decient life until about 7-10 yrs ago and it stated progressing rapidly I now stuggle with horrible pain lack of mobility loss of doing anything hardly which is causing depression I really need a Dr that speacializes in CMT nd will except my insurance!!! I’m in Stockton CA I’m willing to travel if needed?

  4. Dennis Perdue

    I have cmt and have moved from chicago to the st louis are. Looking for a neurologist in the st louis area

  5. Kelly McDonald

    Did anyone ever point to a doctor in the Atlanta area?

  6. Kathy McNeill

    I’ve moved to Oklahoma and need a neurologist who knows about cmt. I was diagnosed in my 20s. I am 65 and wear leg braces. I have sudden tingling throughout my body and sudden weakness in my legs. I live in the Tulsa Oklahoma area. Do you have any recommendations. I have contacted several Neurolgists and cannot get in to see one. Please advise.

    • Charley long

      Looking for a doctor in the Knoxville, Tennessee area specializing in CMT

  7. Kathy

    Diagnosed with CMT type 2F
    I need to locate a doctor in Central California that can assist me in understanding and caring for myself in a proactive manner for the best quality of life.
    Thank you, KL

  8. gloria rouhai williams

    My son has CMT2. We have moved to South Carolina and looking for the best physician specialized in CMT. I am willing to travel anywhere.

  9. Rhonda Whitley

    My husband has CMT as does his sister and niece. He is in constant pain. Has difficulty walking. He had surgery on his right foot last year. His foot is now worse. He walks on his ankle. He shoes are reconstructed. We are now told the only recourse is to fuse the bones in his foot and ankle. We’re looking for a CMT specialist in SC or possibly Georgia.

  10. Kathy McNeill

    I need to find a Dr knowledgeable of CMT in OK. I am 65 and wear braces to walk. At my age no one seems to take it seriously. Please help. Thank you.

  11. Tina Poulette

    Looking for a CMT Doctor Syracuse NY.

  12. Millicent Warner

    I am looking for a knowledgeable neurologist for my daughter who has CMTA1. We live in the Anchorage, Alaska area. Though we have neurologists in town, I haven’t found one with a specialty in CMT!

  13. Debbie Carr

    My husband has CMT1a, 3 weeks ago he had a pacemaker put in for total heart block . One of the doctors at Buffalo General hospital said it could be related every doctor he has seen since feel it’s not related. We are looking for help has anyone else heard of this?

  14. Christine Freeburg

    My husband has CMT and is looking for a doctor in Chicago. Can you provide me with some suggestions?


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