Hereditary Neuropathy Community Receives New On-line Health Care Directory
Hereditary Neuropathy Foundation Launches Provider Directory to Support Optimal Patient Management for Rare Disease Community
NEW YORK, Dec. 1, 2015 /PRNewswire/ -- The Hereditary Neuropathy Foundation (HNF) announces the launch of an on-line Health Care Provider Directory for the hereditary neuropathy community, which includes patients with a rare disease called Charcot-Marie-Tooth (CMT). This is the first on-line, health care provider directory that has ever been offered to this community to include comprehensive testing to certify health care professionals (HCPs).
The tool is beneficial for both patients and health care professionals (HCPs): it enables patients to find disease specialists in their local communities and provides participating HCPs with educational information and resources for serving the CMT and inherited neuropathy (IN) community. Learn more about the directory at https://vimeo.com/140441163 or begin using it at http://www.hnf-cure.org/provider-directory/.
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 a progressive disease: 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, with more being discovered each year; however, there are currently no cures and only palliative treatments. Current therapeutic regimens involve a multi-disciplinary approach for managing symptoms, often leaving a patient—once correctly diagnosed—challenged to find local HCPs who are familiar with the complexities of treating the whole person with CMT.
"We are excited to offer this robust HCP Directory to people suffering from CMT and IN. At the same time, it will also support HCPs education with information to accurately diagnose, offer or refer treatments to improve quality of life and up-to-date information on cutting edge treatments and clinical trials", shares Allison Moore, HNF founder and CEO.
"A CMT patient's functionality and disease management depend on working with a team of health care professionals, which can include neurologists, physical therapists, pain specialists, orthotists, and other specialists," continues Moore. "HNF understands that people with CMT and IN face huge gaps in accessing care to build this team: we are working to bridge these gaps by connecting patients and health care providers."
"Living with CMT and INs can generate great stress for the individuals impacted, as well as their families—and that's on top of the disease's physical burdens. Patients want to live their lives as 'normally' as possible, yet their disease can isolate them because loved ones and even their circle of caregivers are not familiar with the dynamics of managing CMT and INs on a daily basis and progressively over the years," observes Dr. Mark Gudesblatt, M.D., South Shore Neurological Associates, P.C.
HNF's Health Care Provider Directory includes tools and links to help patients find information about the professionals listed in the directory, map their location, and view other online profile information. The Foundation expects the directory to evolve over time into a robust patient-centered care portal serving patients and health care providers alike.
The Directory is made possible thanks to grant support from Pharnext.
About Hereditary Neuropathy Foundation (HNF)
HNF, a non-profit 501(c) 3 organization whose mission is to increase awareness and accurate diagnosis of CMT and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures. HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) program, a collaborative effort with academia, government and industry, to develop treatments for CMT. Currently TRIAD involves many groups that span the drug discovery, drug development, and diagnostics continuum.
Contact: Allison Moore
T: 1-855-HELPCMT (435-7268)
E: info@hnf-cure.org
SOURCE Hereditary Neuropathy Foundation
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