Awareness

Allison Moore is going to be published!

A blog within a blog.

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes –… Continue reading

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

TNA and HNF Logos smallSUBJECT: SAVE THE DATE! “Hereditary Neuropathies” Facebook Chat on July 24th

The Neuropathy Association and the Hereditary Neuropathy Foundation To Co-Host the “Hereditary Neuropathies” Facebook Chat On July 24th! Click here for details!

The Neuropathy Association and the Hereditary Neuropathy… Continue reading

Talking With Classmates about CMT

hughesSix year old Miah was understandably nervous, apprehensive. It was hard enough to wear leg braces to school every day, but talk about it? Maybe that was a bit too much…

Not with the help of her family! Older sister… Continue reading

One Woman’s Success with Surgery

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

BERNADETTE SCARDUZIO: The Face of Charcot-Marie-Tooth Disease

BERNADETTE SCARDUZIO:

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

HNF Media Partner: World Orphan Drug Congress USA

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

Women’s Group Blog for CMT Awareness: The Fab Five

Clockwise is: Melissa, Michelle, Lenka, Nicole and EstherAbout this time last year, Melissa Arakaki of Spanish Fork, UT told us what prompted her to write to Utah Gov. Herbert on behalf of CMT Awareness Month. After connecting through Facebook with other people who have Charcot-Marie-Tooth (CMT), Melissa… Continue reading

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