If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.
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Research
Total posts in Category: 95
Allison Moore is going to be published!
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 – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.
New Registry Helps Researchers Find A Cure: Q & A with CEO Kyle Brown, Crossroads
The Hereditary Neuropathy Foundation (HNF) and Hannah’s Hope Fund (HHF) are excited about their partnership to co-fund the Global Registry for Inherited Neuropathies
HNF-WVU-NIOSH Study update:
We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”
Assay Depot And Rare Genomics Institute Award Prizes To Study 26 Rare Diseases
SAN DIEGO and ST. LOUIS, Feb. 28, 2013 /PRNewswire/ — In recognition of Rare Disease Day, Assay Depot and Rare Genomics Institute (RGI) today announced the winners of the first ever Rare Disease Science Challenge:
“Fighter Mom’s” Join Forces
Is it just coincidence, being in the right place at the right time, or is it synchronicity?...
Dr. Robert Baloh Answers Our Questions About iPS Cell Research
Big news is happening on a cellular level at Cedars-Sinai Medical Center’s Regenerative Medicine Institute in Los Angeles, CA. Robert H. Baloh, MD PhD, Director of Neuromuscular Medicine, in conjunction with Patrick D. Lyden, MD Neurology Dept. Chair, and Clive Svendsen, PhD, Institute Director, are studying disorders that start in nerve cells.
Get the Latest Neurology News!
Thanks to the American Academy of Neurology (AAN), obtaining the latest information on neurological conditions is a cinch.
Stem Cell Line with Charcot-Marie-Tooth Available for Research
Thanks to collaborative efforts of the University of Michigan Consortium for Stem Cell Therapies and molecular research scientists at Michigan-based Genesis Genetics, scientists are one step closer to understanding Charcot-Marie-Tooth disease.
HNF to fund promising research on Charcot-Marie-Tooth
HNF is committed to pursuing treatment and a cure for Charcot-Marie-Tooth disease, and we cannot fulfill this mission without your help.
CMT Research Update: HNF-Funded Projects
We are currently funding two very important research projects, one for CMT type 1 and the other for CMT type 2A.
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