CATEGORIES: GRIN Patient Registry | Research | Research and Critical Trials

CMT Biobank: We Need Your HELP!

by Courtney | Feb 1, 2024 | 0 comments

HNF is excited to continue collecting samples for researchers and industry to help develop treatments for CMT. CMT impacts the quality of life starting in childhood and is progressively debilitating. Currently, there are no treatments, but there are many potential therapies in the pipeline. There are still gaps in understanding the natural history of the disease correlation of genotype/ phenotype, the availability of patient biospecimens for translational research, and the validation of drug candidates and biomarkers for CMT.

HNF is the only CMT advocacy group that gives access to these patient samples at minimal cost.

The locations for specimen collection are currently being discussed. Please give us feedback if you would like us to come to a city near you!

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Can Existing Drugs Treat CMT?

by Courtney | Oct 13, 2022 | CMT Type - CMT2A, Rarebase, Research and Critical Trials, Webinars - Research and Clinical Trials | 0 Comments

HNF, in partnership with Rarebase, is leading the charge in the first-ever research initiative to tackle multiple types of CMT in one project using its tech-enabled drug discovery platform called “Function.”

Battersby Lab Donor Story: Fighter Moms Donate to Vital Research into Mitochondrial Diseases

by Estela Lugo | Oct 4, 2022 | CMT Type - MTRFR-C12orf65, Faces of CMT - Jaxson, Faces of CMT - Zach, Research, University of Helsinki | 1 Comment

Battersby Lab Donor Story Fighter Moms Donate to Vital Research into Mitochondrial Diseases

The Key Role CMT Patients Play in Research

by Courtney | Sep 16, 2022 | GRIN Patient Registry, Living with CMT, Research and Critical Trials, Webinars - Research and Clinical Trials | 0 Comments

Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.

What is SORD Deficiency?

by Courtney | Sep 11, 2022 | Research and Critical Trials, Webinars - Research and Clinical Trials | 0 Comments

Could you be 1 of the estimated 3300 patients in the US with the gene causing SORD Deficiency?

SORD INSPIRE Phase III Clinical Trial

by Estela Lugo | Sep 9, 2022 | Applied Therapeutics, CMT Type - SORD Deficiency, Research, TRIAD | 0 Comments

HNF Partner Applied Therapeutics is Currently Enrolling SORD Deficiency Patients for the INSPIRE Phase III Clinical Trial

The Future of CMT Research

by Courtney | Aug 13, 2022 | Research and Critical Trials, TRIAD, Webinars - Research and Clinical Trials | 0 Comments

Hear from Allison Moore, Founder/CEO of the Hereditary Neuropathy Foundation about the past, present and future or research.

3 New CMT Drug Development Projects

by Estela Lugo | Apr 11, 2022 | Rarebase, Research, Veneto | 3 Comments

HNF Announces 3 New Drug Partnerships & Pathways Targeting Multiple Forms of CMT.

What is SORD Deficiency: Part 2

by Courtney | Mar 11, 2022 | Applied Therapeutics, CMT-Connect, Research, Webinars - Research and Clinical Trials | 0 Comments

Join us for this webinar as we learn more about Sorbitol Dehydrogenase (SORD) Deficiency

A study of the correlation between gait abnormalities, activity monitoring parameters, CMTPedS and a biomarker in children with Charcot-Marie-Tooth disease.

by Courtney | Mar 1, 2022 | GRIN Patient Registry, Research and Critical Trials, TRIAD | 0 Comments

A study of the correlation between gait abnormalities, activity monitoring parameters, CMTPedS and a biomarker in children with Charcot-Marie-Tooth disease.

HNF collaborates with Rarebase on a Drug Discovery Platform to develop treatments for Charcot-Marie-Tooth (CMT)

by Estela Lugo | Oct 12, 2021 | Rarebase, Research, TRIAD | 2 Comments

HNF collaborates with Rarebase on a Drug Discovery Platform to develop treatments for Charcot-Marie-Tooth (CMT)

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CMT Biobank: We Need Your HELP!

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