• Mark Potter became a registered member 9 months, 4 weeks ago

    • Hey Mark,
      Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our community! Please feel free to browse our topics and share your opinion. Remember, me and Frankie, the other moderator, are here to answer any questions you may have, so feel free to reach out to us! @matthew-lafleur, @frankie-perazzola

      • Matt, thanks for allowing me to join. This is a very rare disease and I know of only one individual who has been confirmed to have it. I have been working in Gene Therapy for some time and we often concentrate our efforts on rare ” orphan diseases”. These forums allow others (myself) to better understand the daily obstacles encountered by people who live with these diseases. Although my profession deals on a molecular level of diseases putting a face on it makes it a little easier to understand and a little more real. Again thanks and I will be spending a more time on the site everyday.
      • Hi Mark! Thank you for signing up and welcome to the FA forum!

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