How to get genetic Testing: The CMT Genie

by Courtney | Sep 10, 2022 | 0 comments

Trying to get a genetic confirmation of CMT can be overwhelming, and you might not have access to healthcare providers who are familiar with all the choices out there. HNF’s CMT Genie is designed to assist you and your healthcare provider in determining what the best option is for you! Learn how HNF has teamed up with Genome Medical to provide virtual genetic counseling and fast, affordable testing right from your own home! LIVE Q&A with Genome Medical & Estela Lugo.

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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.”

SORD Webinar – Part 2 – Clinical Trial Update

by Courtney | Oct 9, 2022 | Applied Therapeutics, CMT Type - SORD Deficiency, CMT-Connect, CMT-Connect Webinars, Featured | 0 Comments

Clinical Trial Update for SORD Deficiency – Applied Therapeutics – Dr. Shoshana Shendelman

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.

Applying for Social Security Disability 101

by Courtney | Sep 13, 2022 | Legal Rights and Benefits, Webinars - Legal Rights and Benefits | 0 Comments

The Social Security Administration (SSA) doesn’t make it easy for those with CMT to get the Social Security Disability Benefits they deserve.

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?

Real Talk with Joey Nicoletti

by Courtney | Sep 10, 2022 | CMT-Connect Webinars, Emotional and Mental Health, Webinars- Emotional and Mental Health | 0 Comments

Joey’s family has a history of Charcot-Marie-Tooth, and he decided to get tested at the end of 2019. He learned at the age of 23 that he had CMT-1B and needed to adapt his way of life so that he could continue performing.

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.

Setting Healthy Boundaries

by Courtney | Jul 12, 2022 | Emotional and Mental Health, Webinars- Emotional and Mental Health | 0 Comments

Setting healthy boundaries is part of self-care and self-respect. It is being assertive without the need to be aggressive. Healthy boundaries can help us define our uniqueness and our core. Boundaries are not just about getting what we want. It’s about getting to live our lives on our own terms.

Empowering Kids with CMT

by Courtney | May 12, 2022 | School & College, Webinars - School and College | 0 Comments

What are the key ingredients and practices for raising empowered kids with CMT? Dr. Ficchi is a licensed therapist with specialty areas of focus on individuals with disabilities.

Pharnext Announces On-Schedule Completion of Patient Enrollment in its Pivotal Phase III Trial of PXT3003, the PREMIER Trial, for the Treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A)

by Courtney | Apr 29, 2022 | CMT Type - CMT1A, Featured, Pharnext, TRIAD - Therapeutics | 0 Comments

Pharnext Announces On-Schedule Completion of Patient Enrollment in its Pivotal Phase III Trial of PXT3003, the PREMIER Trial, for the Treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A)

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How to get genetic Testing: The CMT Genie

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