Standards of Care Meeting Series - Session 1 | MLD Advocacy & What We’ve Learned
Standards of Care Meeting Series - Session 1 | MLD Advocacy & What We’ve Learned
Philadelphia, PA
Event will take place 10:00am - 12:00pm EST 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 Hos…
Friday, February 26 2021
10:00 AM
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12:00 PM
Standards of Care Meeting Series - Session 3 | Updates in MLD Clinical Therapies
Standards of Care Meeting Series - Session 3 | Updates in MLD Clinical Therapies
Philadelphia, PA
Event will take place 10:00am - 12:00pm EST Dr. Bobby Gaspar, Orchard Therapeutics — Gene therapy: EMA approval, FDA status, Compassionate Use Dr. David Whiteman, Takeda Pharmaceuticals — Enzyme Replacement Therapy: Embolden updates Dr. Albert Seymour, Homology - Clinical Trial Updates Dr. Paul Or…
Friday, March 12 2021
10:00 AM
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12:00 PM
LDNBS Advocacy Bootcamp
LDNBS Advocacy Bootcamp
Philadelphia, PA
The Leukodystrophy Newborn Screening Action Network is hosting an in-person LDNBS Advocacy Bootcamp on October 15, 2021 at The Study in Philadelphia, PA! Our objective for this event is to equip/energize advocates and organizations to work together to pursue NBS for leukodystrophies and LSDs in t…
Thu, Oct 14 2021
5:30 PM
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Fri, Oct 15 2021
5:00 PM
Standards of Care Meeting Series - Session 2 | MLD Newborn Screening: ScreenPlus, RUSP and Next Steps
Standards of Care Meeting Series - Session 2 | MLD Newborn Screening: ScreenPlus, RUSP and Next Steps
Philadelphia, PA
Event will take place 10:00am - 12:00pm EST Dr. Melissa Wasserstein, Montefiore Medical Center — NY ScreenPlus pilot Amy Gaviglio — NBS Counseling and Follow-up Shanna Quimby, Cure MLD/Gavin Fighting for a Cure — NBS for Leukodystrophies Dr. Jaap-Jan Boelens, Memorial Sloan Kettering Cancer Cent…
Friday, March 5 2021
10:00 AM
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12:00 PM