Interested in driving CMT research forward? We need you!

by | Mar 8, 2023 | 3 comments

Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!

Key Points:

  • The account creation process is best done on a computer using Chrome, Edge, or Safari browsers.
  • The first step is to go to the HNF website and choose “New to GRIN” on the GRIN registry page to access the request access form.
  • After completing the request access form, you’ll receive an email from HNF to verify your account.
  • The natural history study involves answering 60 CMT-related questions about how the disease affects you.
  • There are also NIH-funded ClinGen surveys that researchers can use to better understand other signs and symptoms related to CMT.
  • The Sharing Center allows you to create a link to share your surveys.
  • The Documents section is where you can upload your genetic test results.
  • The dashboard shows all your surveys, new and in-progress studies, and completed surveys, along with the time to complete them, the number of questions, and the start button.
  • The General Information section lets you view and edit your basic contact information.
  • The Journal is for your personal use, and the Messages section is where you’ll receive messages from inside the GRIN platform (the sender will be HNF).

Learn more on this topic

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HNF has partnered with Rarebase, a public benefit precision medicine company that has screened a large library of FDA approved small molecules to identify candidates for various types of CMT. Their tech-enabled drug discovery platform is called Function™. There are many published discoveries on the genetic cause of many types of CMT, including an understanding of the basic mechanism of disease and potential targets for FDA-approved drug repurposing. It is this understanding that allows HNF and Rarebase to target the genetic root cause of CMT.

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  1. Dianna Tyler

    I suffer with intense neuropathy pain especially at night.

  2. Dianna Tyler

    I would like to join. I have CMT AND
    Hereditary neuropathy.


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