Global Registry for Inherited Neuropathies


 
           

HNF & HHF Announces the Global Registry for Inherited Neuropathies

The Hereditary Neuropathy Foundation and Hannah's Hope Fund have partnered to co-fund the creation and support of the Global Registry for Inherited Neuropathies. Hannah's Hope Fund is a patient advoacy organization specific to a hereditary neuropathy called Giant Axonal Neuropathy (GAN), a type of CMT. The Hereditary Neuropathy Foundation is a national patient organization whose mission is find treatments that will halt, reverse and utimately cure all forms of CMT the most common inherited neuromuscular condition affecting 2.6 million people worldwide.

This collaboration represents a huge step toward developing treatments and a cure for CMT by creating a private, secure registration of those diagnosed with CMT. The registry will provide exponentially wider visibility for researchers into the CMT community and allow more precise targeting of specific conditions. As Lori Sames, Executive Director of Hannah’s Hope Fund explains, “CMT is one of the more common of ‘rare disorders.’ However, each form of CMT is quite rare. This clinical registry will be an outreach tool, providing patients with instructions on how to get properly diagnosed which will expedite research. This clinical registry, the first of its’ kind, is a huge win for both patients and scientists who are working very hard to provide treatments.”

The goal of the registry is to enable analysis of data across all hereditary neuropathies and to facilitate clinical trials and other studies. Patients, caregivers, medical professionals, CMT Centers, and any other related patient organizations are invited to participate by helping us to collect patient clinical information. By participating you are helping us with our mission to cure hereditary neuropathies.