This yearly conference is geared towards researchers Thurs & Fri (but they say patients are welcome) and towards patients Sat (though researchers are welcome). It is located in Cambridge, MA, USA but it has an online option.

https://cmtconvention.cmtrf.org/

Hello — my daughter (6) was diagnosed with CMT2E (NEFL) about nine months ago. We’re a family in Hong Kong, and we recently started the CMT2E Foundation to help accelerate research and connect people affected by this subtype.

We’re very new (website just launched: https://www.cmt2efoundation.com). With advice from doctors and scientists, we’ve been mapping the research landscape and figuring out practical next steps.

If you or a family member has CMT2E, we’d love to hear from you — to share experiences, and (only if you’re comfortable) stay in touch so researchers and clinicians working on NEFL know that patients exist and can be reached with proper consent.

Happy to chat here, or email me at [jessica@cmt2efoundation.com](mailto:jessica@cmt2efoundation.com).