Session 1 | MLD Advocacy & What We’ve Learned

Standards-of-Care-Meeting-Series

Session 1 | MLD Advocacy & What We’ve Learned

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Friday, February 26, 2021
10:00am – 12:00pm via Zoom

Speakers & Themes Include:

  • Dr. Albert Freedman, Freedman Counseling — Supporting newly diagnosed families
  • Lesa Brackbill, Leukodystrophy NBS Advocate — Lobbying for NBS & LDNBS.org
  • Melanie Rumbel, Cure MLD — Global outreach & MLD Contact Registry
  • Dr. Laura Adang, Children’s Hospital of Philadelphia — MLD Natural History
  • Erica Barnes, Chloe’s Fight Rare Disease Foundation — Moderator

This mix of speakers from different areas of the leukodystrophy community will provide updates about their respective spaces and share what they’ve learned. Each speaker will present for 10 minutes (40 minutes of presentations) and the remaining 50 minutes will be used for moderated discussion. We will hear about supporting newly diagnosed families, newborn screening advocacy, advantages of an MLD Patient Contact Registry, and updates on the MLD Natural History Study from CHOP.

Date

Feb 26 2021
Expired!

Time

EST
10:00 am - 12:00 pm

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