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Monday, March 28, 2016

Collabrative Partnership Will Promote Community Support and Research for People with Charcot-Marie-Tooth and Inherited Neuropathies

The Hereditary Neuropathy Foundation (HNF) announces its new national network designating medical Centers of Excellence (COE) for the hereditary neuropathy patient community, which includes those with a rare disease called Charcot-Marie-Tooth (CMT) and inherited neuropathies (IN).  The designated COEs demonstrate strengths in providing excellence in clinical care and research for this patient community and will collaborate with HNF to expand their role as CMT/IN patient community hubs for clinical care, community engagement, research and training/education.

CMT is the most common inherited peripheral neuropathy, affecting 1 in 2,500 people or approximately 2.6 million people worldwide at any age. CMT is disease with progressive nerve damage:  early signs can include high arched feet, curled toes, and claw-like hands.  Many of these signs begin subtly and may go undiagnosed for years, leading to legs and arms becoming deformed and difficult to use. Those with CMT often lose the ability to walk and may become dependent upon assistive devices to remain mobile.  Severe, chronic pain is common. Scientists have discovered over 80 related genes, however, there are currently no cures and only palliative treatments.

The program launches with the following ten institutions receiving HNF COE designation:

  • Brigham and Women's Hospital (Boston, MA)
  • Cedars-Sinai Medical Center (Los Angeles, CA)
  • Columbia University Neuropathy Research Center (New York, NY)
  • Hospital for Special Care (New Britain, CT)
  • Saint Louis University Medical Center (St. Louis, MO)
  • Saint Luke's Rehabilitation Institute (Spokane, WA)
  • University of Florida College of Medicine (Gainesville, FL)
  • University of Kansas Medical Center (Kansas City, KS)
  • University of Miami-Miller School of Medicine (Miami, FL)
  • University of Minnesota Medical School (Minneapolis, MN)
"HNF's primary goal for the HNF Centers of Excellence (COE) program and designation process is to ensure that care access and processes result in positive outcomes for each individual patient's clinical experience," shares Allison Moore, HNF founder and CEO.  "We are honored to have these premier Centers and their leading experts in partnership with us to improve the future for people with inherited neuropathies."

HNF's goals for the COE program are to:

  • Centralize care/clinical research into a collaborative research consortium with improved standard of best practice multi-disciplinary care in the management of CMT and providing services for families with CMT (e.g. therapeutic education);
  • Select and support institutions that excel with regard to knowledge and experience in CMT/IN care with a multi-disciplinary team;
  • Establish effective partnerships between institutions and local communities to conduct innovative research and to improve care/eliminate health disparities;
  • Strengthen existing training activities used to prepare clinicians and researchers to improve CMT care; and,
  • Conduct community engagement and outreach efforts, including on-going workshops and forums to serve the local community with therapeutic education and support.
"Based on the recent implementation of clinical trials for CMT, and HNF's goals in implementing more trials in the next 2-5 years, a geographically diverse network of local/and or regional clinical centers is critical to our plans and funding programs," continues Moore. "This new network will have the possibility to be mobilized and enrolled rapidly in new trials—which will ultimately save time and improve the chances of giving patients the therapies they currently do not have."

As part of HNF's community engagement goal for the COE network, Centers will have a chance to participate in HNF's new patient-focused CMT-Connect™ educational program, aimed at bringing wellness and empowerment workshops to local patients and their families.  These programs are due to launch in April/May timeframe in Rochester, NY, Holbrook, NY and New York City. 

Information on dates and locations is available at


Chris Wodke
Founder and Manager Team CMT

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