The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
As a contact registry, the RDCRN collects limited data on patients with CMT. For example,… Continue reading
The Neuropathy Association and the Hereditary Neuropathy Foundation To Co-Host the “Hereditary Neuropathies” Facebook Chat On July 24th! Click here for details!
One Woman’s Success with Surgery
The only thing Sarah Clauss has given up because of Charcot-Marie-Tooth (CMT) is waterskiing. “I live on the lake so I attempted waterskiing but…,” jokes the 25 year old, Lake Wallenpaupack, Pennsylvania resident, “it wasn’t… Continue reading
The Face of Charcot-Marie-Tooth Disease
BY DEBORAH A. PIERRO of I.D.E.A.L Magazine
In mid-October 2012, I had the opportunity to interview Bernadette Scarduzio (Bern). She is a lovely young woman who suffers from Charcot-Marie-Tooth (CMT), an inherited disease… Continue reading
In the world of rare disease and orphan drug research, it’s incredibly important for patient groups and industry to collaborate in order to best serve the patient community. With a widespread and niche patient base, pharma and biotech need to… Continue reading