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:
HNF's goals for the COE program are to:
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 www.hnf-cure.org/centersofexcellence.
Founder and Manager Team CMT