Pharmaceutical / Industry
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Alex Therapeutics, Stockholm, Stockholm County
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Amicus Therapeutics, Princeton, NJ
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Amgen, Thousand Oaks, CA
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Avexis, Bannockburn, IL
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Biogen, Cambridge, MA
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Genentech/Roche, San Francisco, CA
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Horizon Therapeutics, Deerfield, IL (Now Amgen)
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Ionis Pharmaceuticals, Carlsbad, CA
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NMD Pharma, Aarhus, Denmark
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Novartis Gene Therapies, Bannockburn, IL
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Retrophin, San Diego, CA
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Sarepta Therapeutics, Cambridge, MA
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Scholar Rock, Cambridge, MA
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Syneos Health Rare Disease Consortium, Morrisville, NC
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Travere Therapeutics, San Diego, CA
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TREND Community, Philadelphia, PA
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Ultragenyx Pharmaceutical, Novato, CA
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World Orphan Drug Congress
Previous Engagements
Rare Disease Organizations
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Aicardi Goutieres Syndrome Advocacy Association (AGSAA)
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ALDConnect (Adrenoleukodystrophy)
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Alagille Syndrome Alliance
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​CDG CARE (Congenital Disorders of Glycosylation)
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CTNNB1 Foundation (CTNNB1 Syndrome)
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Cure GM1 (GM1 Gangliosidosis)
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Cure LBSL (Leukoencephalopathy)
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Cure MLD (Metachromatic Leukodystrophy)
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CureSMA (Spinal Muscular Atrophy)
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Cystinosis Research Network
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Freidrich's Ataxia Research Alliance
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GBS/CIDP Foundation International (Guillain-Barre’ syndrome/chronic inflammatory demyelinating polyneuropathy)
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Global Genes
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Global Leukodystrophy Initiative (GLIA)
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HCU Network America (Homocystinurias)
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Histiocytosis Association
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IgG4-RD Community
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International FOP Foundation (Fibrodysplasia Ossificans Progressiva)
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Jett Foundation
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Lymphangiomatosis & Gorham's Disease Alliance
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National Ataxia Foundation
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National Organization of Rare Disorders (NORD)
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NephCure International
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Muscular Dystrophy Association (MDA)
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National Ataxia Foundation
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Professional Patient Advocates in Life Sciences (PPALS)
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RUNX1 Research Network
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SMA Australia (Spinal Muscular Atrophy)
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SMA Russia (Spinal Muscular Atrophy)
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Two Disabled Dudes
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VACTERL Syndrome Association
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XLH Network
Health Care Organizations
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Bayada Home Health Care, Moorestown, NJ
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Center for Spiritual Care & Pastoral Formation, Wilmington, DE
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Children's Hospital of Philadelphia
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Delaware Valley Society of Pediatric Nurses
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Gene Therapy Program, Perelman School of Medicine, University of Pennsylvania
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KenCrest Community Services, Philadelphia, PA
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National Association of Home Care & Hospice
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National Society of Pediatric Nurses
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Nemours/dupont Hospital for Children, Wilmington, DE
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Nemours Children's Hospital, Orlando, FL
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NY ScreenPlus: A Comprehensive, Flexible, Multi-disorder Newborn Screening Program, Albert Einstein College of Medicine, Bronx, NY
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Mothers of Multiples
Universities & School Districts
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Avon Grove School District, West Grove, PA
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Delaware Valley Association for the Education of Young Children, Philadelphia, PA
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Delaware Valley Friends School, Paoli, PA
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Friends Select School, Philadelphia, PA
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Landsdowne Friends School
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Moorestown Friends School, Moorestown, NJ
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Neumann University, Aston, PA
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​Radnor Area School District, Wayne, PA
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Robert A Fox Leadership Program, University of Pennsylvania
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Stratford Friends School, Newtown Square, PA
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Unionville-Chadds Ford School District, Kennett Square, PA
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University of Delaware, Newark, DE
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University of Pennsylvania School of Nursing, Philadelphia, PA
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Westtown School, West Chester, PA
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Wilmington Friends School, Wilmington, DE