The second webinar in the series, “Amplifying the NM Community Voice”, focuses on Research Fundamentals. The webinar includes defining PCOR (Patient Centered Research Outcomes and review of the role of the CRPs (Community Research Partners), providing information on our in-person gathering and reviewing existing infrastructure in place to support Nemaline Myopathy research and how families can get involved. Dr. Michael Lawlor discussed the importance of human tissue resources in biomedical research.

The main takeaways from the webinar included:

  1. CMDIR: NM patients can sign up as new registrant or claim previous registry profile at https://cmdir.org.
  2. CMD-TR: Have a surgery coming up? Consider a tissue donation to advance research faster. Email StacyCossette@protonmail.com for more information.

Watch the full webinar below: