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.
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.
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical...
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
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”
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
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:
Lori Sames and her husband Matt formed Hannah’s Hope Fund (HHF) following their youngest daughter’s diagnosis of Giant Axonal Neuropathy (GAN) in 2008. GAN is the most rare, and one of the most severe, forms of Inherited Neuropathy.
Is it just coincidence, being in the right place at the right time, or is it synchronicity?...
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.
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