Attendee List

 

June 9 - 11, 2026

Thomas M. Menino Convention & Exhibition Center | Boston, MA

 

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Organisation
Job Title
  • AB2 Bio Ltd.
    Chief Executive Officer
  • Abacus Medicine Pharmaceuticals
    Analyst, Search & Evaluation
  • Abacus Medicine Pharmaceuticals
    Director, Search & Evaluation
  • Abacus Medicine Pharmaceuticals
    VP Business Development & Licensing
  • Abeona Therapeutics
    VP, Program Leadership & Clinical Operations
  • Accessia Health
    Executive Vice President of Development and Growth
  • Across Healthcare
    Chief Executive Officer
  • ACTA2 Alliqnce
    President
  • Acuitas Therapeutics
    Chief Scientific Officer
  • Acumetis
    Ops
  • Adelphi Values PROVE
    Director
  • admedicum
    Co-Founder and Managing Partner
  • Adnexi
    Cofounder and CEO
  • Adnexi
    Cofounder and CEO
  • Advancium Health Network
    CEO
  • Advenion
    Ceo
  • AERA THERAPEUTICS
    CO-OP DMPK
  • Aera theraputics
    CMC CO-OP
  • AISAC Odv
    President
  • Aixial inc
    Director, Business Development
  • Aixial inc
    Director, Strategic Development and Delivery
  • Aixial inc
    Director, Business Development
  • Aixial inc
    Events Management
  • Akamis Bio
    Head Business Development
  • Alexion
    Global Early Commercial Strategy Lead
  • Alexion
    Market Research and CI PArtner
  • Alexion
    Admin Coord
  • Alexion - AstraZeneca RDU
    Global/US Head of MR & CI
  • Alexion, AstraZeneca Rare Disease Unit
    Global Market Insights
  • Alkeus Pharmaceuticals
    Clinical Development Consultant
  • Alkeus Pharmaceuticals
    chief development and strategy officer
  • Allele Consulting
    Volunteer
  • Allerkarn Limited
    Company Director
  • Alliance to Cure Cavernous Malformations
    Chief Executive Officer
  • Almac Group
    karisa.udovic@almacgroup.com
  • Alnylam Pharmaceuticals
    Senior Director, Medical Affairs
  • AlphaRose Therapeutics Inc.
  • Ambit
    Marketing Manager
  • Ambit RD, Inc
    CCO
  • American Brain Foundation
    Vice-Chair
  • American College of Medical Genetics and Genomics
    Director of Public Policy
  • Amgen, Inc.
    Director, Global Regulatory Strategy
  • Amiculum
    US Operations Lead
  • Amicus Therapeutics
    VP Medical International
  • Amicus Therapeutics
    Medical Director, US Fabry
  • Amyloidosis Research Consortium
    President And Chief Executive Officer
  • Amylyx Pharmaceuticals
    Chief Medical Officer
  • Ana Fareed Rare Disease Patient Advocacy
    Founder
  • Analysis Group
    Vice President
  • Analysis Group
    Managing Principal
  • Analysis Group
    Vice President
  • Analysis Group
    Vice President
  • And Scene
    Founder & CEO
  • And Scene
    Founder & CEO
  • ANOVO
    Chief Commercial Officer
  • AnovoRx
    Vice President, Growth & Strategy
  • AnovoRx
    Director, Clinical Strategy & Research
  • AnovoRx
    Sr. Director, Customer Engagement & Marketing Operations
  • AOP Health
    Head of PMO
  • AOP Health
    Vice President, Research & Development
  • Arbor Biotechnologies
    CEO
  • ARCHIMED
    Director, Head of BioPharma Products
  • Arcinova
    Senior Director, Business Development
  • argenx
    Director, Pre-Approval/Post-Trial Access Programs
  • Ariana Pharma
    Chief Business Officer (CBO)
  • Arthritis Foundation
    Director of State Legislative Affairs
  • Ascidian Therapeutics
    Chief Business & Financial Officer
  • Asklepion Pharmaceuticals LLC
    Chief Medical Officer
  • Asociación Gaucher de México
    Contador
  • A-Synaptic Pharma
    VP, Pharmacology
  • Ataxia Telangiectasia Children's Project, Inc.
    Executive Director
  • Athyna Pharma LLC
    C.E.O
  • Atlas Venture
    Senior Associate
  • ATTR - Amyloidosis Patient-columnist
    Patient Speaker/Educator
  • ATTR- CM Patient-Columnist
    Free Lance writer
  • Avery's Hope
    Executive Director
  • AXIS - The Reimbursement Experts
    CEO & Founder
  • AXIS - The Reimbursement Experts
    CEO & Founder
  • AXIS - The Reimbursement Experts
    Director of Business Operations
  • AXIS - The Reimbursement Experts
    Director of Business Operations
  • Axis Advocacy
    Founder/CEO
  • BAGOS Foundation
    Founder
  • Balasa Consulting
    Patient Expert
  • Bayer
    Customer Strategy Lead- Patient Activation Office Lead
  • Baylor College of Medicine
    Senior Regulatory Affairs Associate
  • Baylor College of Medicine
    Medical Director, Neurogenetics
  • Baylor Genetics
    Director, KOL Engagement
  • Beacon Therapeutics
    VP Corporate Development and Communications
  • Beyond the Diagnosis
    CEO
  • Bial
    VP, Head of Rare Diseases
  • BioCryst
    VP, Clinical Development
  • BioCryst Pharmaceuticals
    VP Clinical Development Sciences
  • Biogen
    Value & Access
  • BioIdeations
    Vice President
  • Biomedica GmbH
    EVP of Business Development
  • Biomedica GmbH
    EVP of Business Development
  • Bionical Emas
    Director Patient Advocacy
  • Bionical Emas
    Marketing Communications Manager
  • Biotech Social, Inc
    CEO & Co-founder
  • Biotechnology Innovation Organization
    Senior Director, Patient Advocacy
  • Biovance Consulting
    CEO & Founder
  • Bloom Science
    Director, Patient Advocacy
  • Bloom Syndrome Association
    Parent of Rare Child/ Board Member Bloom Syndrome Association
  • BMS
    Head Patient & Site Engagement Products
  • Böhringer Ingelheim
    Senior Associate Director, Patient Advocacy & Professional Relations
  • Boston Children’s Hospital
    Clinical Research Coordinator
  • Boston Children’s Hospital
    Research Fellow
  • Boston Children's Hospital
    Attending Physician, Investigator, Division Of Genetics And Genomics
  • Boston Children's Hospital
    Consulting Manager, VEOIBD Consortium
  • Boston University
    Professor of Law
  • BPGBio
    Associate Dir. Assay and Biomarker Development
  • BPGBio
    BP business development
  • Breath of Hope RI
    Patient Advocate
  • Breath of Hope RI
    Vice President
  • BridgeBio Neuromuscular
    Head of Global Patient Advocacy
  • Brigham and Women's Hospital
    Executive Director, The MRCT Center
  • Caidya
    VP, Rare Disease & Pediatrics Clinical Development
  • Calliditas
    Medical Director Early Development
  • Cambridge Health Alliance
    Storage Infrastructure Engineer
  • CAMP4 Therapeutics
    Chief Medical Officer
  • Canadian Organisation for Rare Disorder & Rare Diseases International
    President, Chief Executive Officer
  • Canary Concierge
    Co-Founder
  • Canary Concierge
    Access & Reimbursement Manager, Chief HIPPA & Compliance officer
  • Canary Concierge
    Director
  • Canary Concierge
    Board Member
  • Canary Concierge
    Board Member
  • Candel Therapeutics
    Senior Scientist I, QC
  • Care Beyond Limits-Microcephaly Africa Foundation
    Founder & CEO
  • Care Beyond Limits-Microcephaly Africa Foundation
    Operations Manager
  • Care Beyond Limits-Microcephaly Africa Foundation
    Co-Founder
  • Carroll & Morrisette Consulting LLC
    Founder, President
  • Case Western Reserve University
    Rare Disease Center - Representative
  • Catalytic Impact Foundation
    President
  • Catalytic Impact Foundation
    Founder
  • CDKL5 Canada
    Board Member
  • CDKL5 Genetic Research Initiative (CGRI) Foundation
    mRNA Scientific Advisor
  • Cellular Delivery
    Co-Founder & CBO
  • Cencora
    Managing Director, US
  • Center for Innovation & Value Research
    Research Lead
  • CENTOGENE GmbH
    Head of R&D Biochemistry
  • CENTOGENE GmbH
    Senior Vice President, Business Development US Head Pharma and Managing Officer
  • CENTOGENE GmbH
    Marketing Specialist
  • Centogene LLC
    Senior Director of Business Development
  • CENTRE-ALLIANCE FOR RARE DISEASES IN RWANDA
    volunteer
  • CENTRE-ALLIANCE FOR RARE DISEASES IN RWANDA
    Chairperson and Managing Director
  • Charcot Marie Tooth Association
    Board Member
  • Charles River Associates (CRA)
    Principal, Life Sciences
  • Charles River Associates (CRA)
    Principal
  • Check Rare
    Director
  • Child’s Cure Genetic Research
    Scientific Adviser
  • Children's Gaucher Research Fund
    President/Founder
  • Childrens Tumor Foundation
    CEO
  • ChilliPharm Inc
    Territory Manager, US West
  • ChilliPharm, Inc
    Project Manager
  • Cilcare
    Evidence, Value & Access Senior Manager
  • Cilcare
    Clinical Development Audiologist and Trials Manager
  • Cisema
    Director - Life Sciences
  • Clarametyx Biosciences
    Chief Business Officer
  • Clinakos Inc.
    CEO
  • Clinigen
    Global Account Director
  • Clinipace Inc. d/b/a Caidya
    Senior Director, Clinical Development
  • Clinipace Inc. d/b/a Caidya
    Senior Marketing Manager
  • Clinipace Inc. d/b/a Caidya
    Head of Business Development
  • Clinipace Inc. d/b/a Caidya
    Sr. Director, Business Development
  • Clinipace Inc. d/b/a Caidya
    VP, Marketing
  • CLINVANA
    Founder & CEO
  • Cogentia Healthcare Consulting
    Senior Consultant
  • Cogstate
    Sr. Business Development Director
  • Cogstate
    Manager, Senior Principal Scientist
  • Cogstate
    Principal Scientist
  • Cole & Associates
    President
  • Connecticut Children's
    Director/Professor
  • Connecticut Children's/ University of Connecticut School of medicine
    Lead Clinical Research Associate/ Assistant Professor
  • Connective Tissue Coalition
    President and CEO
  • Costello Medical
    Senior Analyst
  • Costello Medical
    Analyst
  • Costello Medical
    Consultant
  • CSL
    Senior Vice President, Medical Affairs
  • CSL
    Director, Regulatory Science, Policy, and Intelligence - North America Lead
  • CTI
    Senior Director Business Development
  • CTI
    Sr. Director, Business Development
  • Curant Rare
    Brand Manager
  • Cure GM1
    Advisor
  • Cure GM1 Foundation
    CEO
  • Cure LBSL
    Founder
  • Cure MFM13
    Scientific Consultant
  • Cure Mito Foundation
    Board Member
  • Cure Mito Foundation
    Vice President
  • Cure VCP Disease
    Director of Scientific Engagement and Collaborations
  • CureLab
    Chief Operating Officer
  • CureLBSL
    Founder
  • CurePSP
    Healthcare data & Outcomes Research Analyst
  • CureShank
    Chief Scientific Officer
  • Curia
    Director, Business Development
  • Cystic Fibrosis Foundation
    Principal, Mission Ventures
  • CytoImmune Therapeutics
    Vice President Regulatory Affairs
  • Daiichi Sankyo Inc
    Global Lead, Clinical Safety and Risk Management
  • Daniellevates
    Advocate, Speaker, & Content Creator
  • Decoding Developmental Epilepsies
    Deputy Director
  • Deerfield
    Principal
  • department of water and sanitation
    Student at Boston University
  • DFCI BODFI
    Alliance Manager
  • Direct Relief
    Senior Director, Specialty Programs
  • Donor X
    Business Development
  • Donor X
    Ceo
  • Donor X
    Business Development
  • Donor X
    Ceo
  • Douglas County Health Department
    Community Health Educator | Immunizations
  • Dyne Therapeutics
    Director, Global Medical Affairs Lead
  • D'Youville University
    Professor
  • EFGAM
    Analyst
  • Egeria Insights
    Founding Partner
  • Egetis Therapeutics US
    President
  • Einstok Born
    COB
  • Einstok börn - Rare disease Iceland
    CEO Family specialist in Rare dieses
  • Einstokborn - Support group Iceland
    CEO and Family specialist in Rare dieses
  • Eledon Pharmaceuticals
    Manager, Medical Affairs
  • Elektrofi
    Vice President, Quality Operations
  • Elevar Therapeutics
    Executive Director
  • Eli Lilly and Company
  • Elly's Team
    Co-Founder
  • EMD Serono
    Search & Evaluation Lead Cardiology, Metabolism and Endocrinology
  • EMD Serono
    VP, Head of New Therapeutic Areas Business Development
  • E-Merge tech Global Services Ltd
    AVP - Research & Technology
  • Emily Whitehead Foundation
    Director of Foundation Operations
  • Engrail Therapeutics
    Medical Director
  • Entrada Therapeutics
    Chief Corporate Affairs Officer
  • Envisagenics
    Director of Business Development
  • EOM Pharmaceuticals LLC
    CEO
  • Epic
    Public Affairs
  • Epic
    Software Developer
  • Epicrispr Biotechnologies
    Associate Scientist
  • EQT Life Sciences
    Vice President
  • ERDERA - INSERM
    Scientific Coordinator
  • ERGOMED
    Chief Growth Officer
  • ERGOMED
    Senior Marketing Manager
  • ERGOMED
    Director, Operational Strategy
  • ERGOMED
    Director, Operational Strategy
  • ERGOMED
    Senior Director, Business Development
  • ERGOMED
    Director, Patient Engagement
  • ERGOMED
    Marketing
  • ERGOMED
    Director, Patient Engagement
  • EUCOPE - European Confederation of Pharmaceutical Entrepreneurs
    Secretary General
  • European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)
    Communications & Patient Engagement Project officer
  • EVERSANA Life Sciences Services LLC
    SVP Business Development
  • EVERSANA Life Sciences Services LLC
    Chief AI & Analytics Officer
  • EveryLife Foundation for Rare Diseases
    Chief of Policy, Advocacy, & Patient Engagement
  • Ewing Sarcoma Institute
    Advisor
  • ExCEEd Orphan s.r.o.
    CEO
  • Experic
    Marketing
  • Expert-Nation.com
    Volunteer Council Member
  • FamilieSCN2A Foundation
    Chief Scientific Officer
  • FamilieSCN2A Foundation
    Director of Advocacy & Education
  • FamilieSCN2A Foundation
    Program Manager
  • FARA
    GC/Dir of Advocacy
  • FDA
    Director of Strategic Coalitions, Rare Disease Innovation Hub
  • FFGA
    Patient Advocate
  • Fibrolamellar Cancer Foundation
    CEO
  • Finding Hope for FRRS1L
    Co-Founder and President
  • FLAG Therapeutics
    President and Chief Executive Officer
  • ForeBatten Foundation
    Executive Director
  • ForeBatten Foundation
    Co Founder
  • Forian
    Marketing Manager
  • Former SVP Horizon / Amgen
    Board Member
  • Foundation for Prader-Willi Research
    Board Member
  • Foundation for Sarcoidosis Research
    Director, Marketing and Communications
  • Foundation for Sarcoidosis Research
    Vice President of Research
  • Foundation for Sarcoidosis Research
    Chief Executive Officer
  • Foundation for Sarcoidosis Research
    Chief of Staff and Strategy
  • Foundation Ichthyosis and Related Skin Types
    CEO
  • Friedreich's Ataxia Research Alliance
    President, Co-Founder
  • FSHD Society
    Chief Executive Officer
  • Full Circles Therapeutics
    CEO
  • FUSO pharmaceitical Industries, Ltd
    Senior exucutive officer, R&D
  • FUSO Pharmaceutical Industries, Ltd.
    Senior Chief
  • Gador
    Director of Regulatory Affairs
  • Galibra Neuroscience
    Co-Founder
  • Galibra Neuroscience
    CFO
  • Galibra Neuroscience
    Co-Founder
  • GEMMA Biotherapeutics
    Chief Medical Officer
  • Genesis Jones
    Executive Director
  • GeneSprout
    Founder and CEO
  • GeneSprout
    Chief Technology Officer
  • Genetic Engineering & Biotechnology News
    Deputy Editor in Chief
  • Genome Medical
    Senior Director of Research & RWD
  • Genome Medical
    Vice President, Strategy
  • Genome Medical
    Marketing Director
  • Genomenon
    VP of Pharma Business Dev
  • Genomenon
    Account Executive, Pharma
  • Genuine Social
    Founder
  • George Washington University
    Researcher and Rare Disease Advocate
  • Gillette Children's Hospital
    Vice President of Research
  • Give an Hour
    Director of Strategic Relationships
  • Glaukos
    Regulatory Affairs Specialist II
  • Global Genes
    Chief Executive Officer
  • Global Genes/RARE-X
    Founder, Chief Mission Officer
  • Global Liver Institute
    Pediatric and Rare Liver Diseases Program Manager
  • Global Pharma Solutions
    Founder and Managing Director
  • Global Service Pharmaceutical SAS
    KAM
  • Global Service Pharmaceutical SAS
    Commercial Director
  • GoCART Therapeutics
    COO
  • Gradus V L.L.C-FZ
    Managing partner
  • Great Point Partners
    Vice President
  • Grunenthal
    Global Market Access
  • GSK
    Scientific Leader
  • Guilford Street Laboratories
    Chief Executive Officer & Co-Founder
  • Guilford Street Labs
    Head of Commercial
  • Hadds foundation
    Board member
  • Harvard College
    student
  • Harvard Medical School
    Director, UDN Data Management Coordinating Center
  • Harvard University
    Program Director, Center for Rare Neurological Diseases
  • Healing Wings Foundation
    CEO
  • Healing Wings Foundation
    Head - Patient Relations
  • Healing Wings Foundation
    Head - Patient Advocacy
  • Healing Wings Foundation
    Founder
  • Health Policy Strategies, LLC
    Partner
  • Hebbian Bio
    Founder & CEO
  • Helping Swans Co.
    Founder
  • Hesperos Inc.
    Clinical Operations Manager
  • Hesperos Inc.
    Chief Executive Officer
  • Heterotaxy Connection
    Director of Community Engagement
  • Histiocytosis Association
    CEO/ED
  • HS Connect
    Patient/Patient Advocate
  • Humigent
    Partner
  • Humigent
    Partner
  • Humigent
    Founder and CEO
  • Humigent
    Partner
  • Humigent
    Partner
  • Hypoparathyroidism Association
    Executive Director
  • IGG4-RD LIFE
    CEO & President, Patient Advocate
  • Imbue Partners
    Managing Partner
  • Immune Deficiency Foundation
    Regulatory Affairs Manager
  • Immune Deficiency Foundation
    Chief Public Policy Officer
  • Immune Deficiency Foundation
    Director, Payor Relations & Policy
  • Immusoft
    SVP Corporate Development
  • Imperfect JOY®
    Filmmaker & Photographer
  • Imperfect JOY®
    Filmmaker & Photographer
  • In Sickness, Men and the Caregiving Culture
    Podcast Host / Producer & Columnist
  • inceptua
    Director, Business Development, Early Access
  • INCSD LLC
    InCSD CEO and President
  • Innovative Research
    RVP Sales
  • Inovalon
    AVP, Sales
  • Inovalon
    Business Development Director
  • International Myeloma Foundation
    Grassroots advocacy
  • International Myeloma Foundation
    Patient - Coach - Advocate
  • International Niemann Pick Disease Alliance
    Vice President - INPDA - Patient Advocacy
  • International Rare Diseases Research Consortium (IRDiRC)
    Chair
  • International Rett Syndrome Foundation
    Director of Translational Research
  • International Vaccine Institute
    Senior Director, Vaccine Process Development
  • Interon Labs Inc.
    Research Associate
  • IOrganBio
    Director of Business Development
  • Ipsen
    MSL
  • Ipsen
    Media Relations Associate
  • IPSEN Biopharmaceuticals
    Director
  • italfarmaco
    CEO Launch & Lifecycle Biopharma
  • ITF Therapeutics
    Director, Business Development (S&E)
  • ITF Therapeutics
    Head of US Marketing
  • ITF Therapeutics
    Head of Patient Advocacy
  • ITF Therapeutics
    Executive Director, Portfolio Strategy & Chief of Staff
  • ITF Therapeutics
    VP, Sales & Marketing
  • ITF Therapeutics
    Associate Director, Patient Advocacy & Engagement
  • ITF Therapeutics
    Head of Corporate Communications
  • ITF Therapeutics
    Communications Consultant
  • ITF Therapeutics
    Chief Operating Officer
  • İVEK Vakfı
    Pharmacy
  • J.S. Cole & Associates, Inc.
    VP of Medical Affairs & Client Relations
  • Jain Foundation, Inc.
    Patient Advisor
  • Jansen de Vries Syndrome
    Vice President/Secretary
  • Jansen de Vries Syndrome Foundation (JdVS)
    President
  • Janssen Global Services LLC
    Bioethics & Strategic Projects Leader, Office of the Chief Medical Officer
  • jCyte Inc
    CEO
  • Johnson & Johnson
    Senior Director, Global Access Policy
  • Joseph Glorioso
    professor
  • Jubilant Radiopharmaceuticals
    Chief Commercial Officer
  • JW Pharmaceutical
    Research Scientist
  • JW Pharmaceutical
    Principal Scientist
  • JW Pharmaceutical
    Executive Head
  • JW Pharmaceutical
    Executive Head
  • JW Pharmaceutical
    Principal Scientist
  • Kaken Pharmaceutical Co.,Ltd.
    Associate Director, Head of Plannig Group
  • Kalevala Therapeutics
    CEO
  • Kalevala Therapeutics
    COO
  • Karuna Integrated Clinical Services
    Founder and CEO
  • Karuna Integrated Clinical Services
    Founder and CEO
  • KCNT1 Epilepsy Foundation
    CSO
  • Keep Me Breathing
    CEO
  • Kelly McGrath
    Senior Director Sales Training & Commercial Effectiveness
  • Kent State University
    Research Assistant and Student
  • KiteGene
    CEO
  • KJT Group
    SVP, Client Strategy & Growth
  • KJT Group
    CEO/President
  • Know Rare
    CEO
  • Know Rare
    CEO
  • Koolen-de Vries Syndrome Foundation
    President
  • Kulli Global Development, LLC
    Founder & CEO
  • Kura Oncology Inc
    Senior Clinical Research Manager
  • Kyowa Kirin
    Head of Patient Services Operations, North America
  • Kyowa Kirin
    Global Head of Value and Access Nephrolgy Franchise
  • LA Communications, LLC
    Head of BD
  • Lafana Holding
    Executive
  • Latinos in Bio
    Co-Founder and Co-Chair
  • Lauren Perna Communications
    CEO & Head Writer
  • LaZaVax Biopharma
    CEO
  • Leerink Partners
    Senior Managing Director / Rare Disease Biotechnology Analyst
  • Lenny's Cure for CONDSIAS
    Founder and Patient Advocate
  • LES LABORATOIRES SERVIER
    Head of Neurology
  • LES LABORATOIRES SERVIER
    Cheif of Staff R&D - Neurology
  • Leyton
    Head of Life Science Cluster
  • Leyton
    Head of Life Science Cluster
  • Ligand Pharmaceuticals
    Investment Associate
  • LOCK AND KEY STRATEGIC PARTNERS, LLC
    Principal
  • Lumanity, Inc.
    SVP & Practice Lead, Clinical & Regulatory
  • Lumanity, Inc.
    Sr. Mgr. Marketing & Communications
  • Lupin
    Vice President - Market Access & Branded Trade
  • Lupin
    President Specialty Pharma
  • Lupin
    Global Heal Neurosciences Specialty
  • Lupin
    Global Head Medical Affairs & Clinical Development
  • Lupin Pharmaceuticals
    Director, New Business Assessment
  • MadeAi
    Product Specialist
  • Magnolia Market Access
    Managing Partner
  • Magnolia Market Access
    Senior Vice President, Market Access & Reimbursement
  • Magnolia Market Access
    Vice President, Market Access & Health Policy
  • Mahzi Therapeutics
    Chief Executive Officer
  • Mantle Therapeutics
    CSO
  • Markkula Center for Applied Ethics
    Director of Bioethics
  • MarylandRARE
    CEO/Founder
  • Mass General Hospital
    Director of cGMP Operations
  • Massachusetts General Hospital
    MD
  • Massachusetts General Hospital
    Neurologist
  • Massachusetts General Hospital and Harvard Medical School
    Fellow, Center for Rare Neurological Diseases
  • Massachusetts General Hospital and Harvard Medical School
    Clinical Research Coordinator
  • Massachusetts General Hospital and Harvard Medical School
    Clinical Research Coordinator
  • Massachusetts General Hospital and Harvard Medical School
    Clinical Research Coordinator
  • Massachusetts General Hospital and Harvard Medical School
    Clinical Research Coordinator
  • Massachusetts Sickle Cell Association
    Patient Advocate and Ambassador
  • MCPHS University
    Pharmacy student
  • Meclinas
    CEO
  • MedaSystems
    VP, Growth
  • Medinsights
    Board Member & Partner
  • Med-Life Discoveries
    Executive VP
  • Med-Life Discoveries
    CEO
  • Metrum Research Group LLC
    President and Chief Executive Officer
  • MGH
    Genetic counselor
  • Milken Institute Strategic Philanthropy Accelerator for Research and Collaboration (SPARC)
    Director, Science Philanthropy Accelerator for Research and Collaboration
  • Milliman Inc.
    Director
  • MilliporeSigma
    Research Scientist
  • Ministry of Health egypt
    Pharmacist
  • Minoryx Therapeutics
    Co-founder and CEO
  • Minoryx Therapeutics
    VP CLINICAL DEVELOPMENT
  • Minoryx Therapeutics
    CHIEF MEDICAL OFFICER
  • Minoryx Therapeutics
    Director HR&Office
  • Miramoon Pharma
    CEO
  • Miramoon Pharma
    Chief Operations Officer
  • Mirum Pharmaceuticals, Inc.
    Executive Director, Development Business Operations and Site Head
  • MitoAction
    CEO
  • MLAB
    Principal scientist
  • MLD Foundation
    President
  • MLD Foundation
    Executive Director
  • MMS Holdings Inc
    Director, Business Development
  • MMS Holdings Inc
    Senior Director, Business Development Operations
  • Mohith Kota
    Data Scientist
  • Molecular Medicine Research Institute
    Executive Director & Senior Investigator
  • MPS Society
    Group CEO
  • Muscular Dystrophy Association
    Board of Directors
  • Muscular Dystrophy Association
    Sr. Account Director
  • Muscular Dystrophy family foundation
    Board Director
  • My Health Focus
    Founder
  • Myasthenia Gravis Association
    Community Program Coordinator
  • Myasthenia Gravis Foundation of America
    Vice President, Global Marketing and Communications
  • N/A
    Patient advocate
  • NanoZymeX
    CEO
  • NanoZymeX
    CEO
  • National Alliance of People with Rare Diseases
    Chairman
  • National M.P.S. Society
    President & Chief Executive Officer
  • National MPS Society
    CSO
  • National Niemann-Pick Disease Foundation
    Sr. Director
  • National Organization for Rare Disorders
    Director of Development
  • National Organization for Rare Disorders
    Director of Medical Affairs
  • National Organization for Rare Disorders (NORD)
    Chief Executive Officer
  • National Pharmaceutical Council
    Chief Science Officer
  • National Scleroderma Foundation
    Senior Director, Philanthropy
  • National Tay-Sachs and Allied Diseases Association - Boston, MA
    CEO
  • Nationwide Children's Hospital
    Principal Investigator, Assistant Professor
  • Nauka Consulting LLC
    Founder and CEO
  • Neoclease
    CEO and Cofounder
  • Nerviano Medical Sciences
    Global Asset Leader
  • Neurelis
    SVP Strategic Initiatives
  • NeuroCores, Inc.
    CEO
  • Neurogene
    VP, Corporate Affairs & Chief of Staff
  • Nevus Outreach, Inc
    Research & Industry Relations Manager
  • New Life Medicals (USA) Inc.
    Director
  • Nexthera Latam
    MBA
  • NEXTPOINT THERAPEUTICS INC
    Senior Research Associate
  • nference
    Strategic Partnerships
  • NHS
    Locum Consultant Histopathologist (retired)
  • Niagen Bioscience
    CFO & Head of BD
  • Niagen Bioscience
    Business Development
  • NIH
    Therapeutic Development Project Manager
  • NIH/NCATS
    Director, Therapeutics Development Branch
  • NIH/NCATS
    Deputy Director, Division of Rare Diseases Research Innovation, Member of IRDiRC Funders Constituent Committee (FCC)
  • NK-One Therapeutics
    CEO
  • n-Lorem Foundation
    Chief Operating Officer
  • NNIT
    Global Business Development
  • NNIT, Inc.
    Director
  • Nobias Therapeutics
    CEO
  • Nome Therapeutics
    Head of Translational Sciences
  • Nome Therapeutics
    Head of Translational Sciences
  • NORD
    Director of Philanthropy
  • NORD
    Associate Director of Education
  • NORD
    Chief Strategy and Operating Officer
  • Northeastern University
    Student
  • Northeastern University
    Graduate Student
  • NorthSea Therapeutics
    VP, Clinical Development
  • Northwell Health
    Clinical Geneticist
  • Nospharma
    CEO
  • Novatek International
    Territory Manager
  • Novo Nordisk
    Market Access Sr. Manager
  • NS Pharma
    Director
  • NS Pharma
    Corporate Communications Manager
  • NS Pharma
    Senior Director
  • NS Pharma, Inc.
    Manager
  • NS Pharma, Inc.
    Manager, Innovation Research Partnering
  • NS Pharma, Inc.
    Manager
  • NTSAD
    Director of Family Services
  • Numiera Therapeutics
    CEO
  • NYU Grossman School of Medicine
    Assistant Professor, Division of Medical Ethics
  • Ocugen Inc.
    Lead Medical Monitor
  • ODDIFACT
    CEO
  • ODDIFACT
    CEO
  • OKYO Pharma
    CEO
  • Only Orphans Cote LLC
    BD Lead
  • Optel
    Marketing
  • Optel
    Marketing
  • Orb Therapeutics
    CEO
  • Orchard Therapeutics
    Head of Government Affairs and Washington, DC Office
  • Orchard Therapeutics
    SVP Global Market Access and International Geographic Expansion
  • Orphan Therapeutics Accelerator
    Founder, CEO
  • Orphan Therapeutics Accelerator
    Chief Operating Officer and Co-Founder
  • Orsini
    VP, Industry Relations
  • OS Therapies
    CBO
  • Otsuka Pharmaceutical Companies
    Associate Director, Data Science
  • P2P Syncro
    President
  • Panome Bio
    Marketing Manager
  • Paradigm Therapeutics
    Executive Director Regulatory Affairs
  • Paradigm Therapeutics
    EVP Regulatory Affairs , QA and Compliance
  • Paradigm Therapeutics
    CFO
  • Paradigm Therapeutics
    CEO
  • Paradigm Therapeutics
    Executive VP of Clinical Operations
  • Paradigm Therapeutics
    CEO
  • Paradigm Therapeutics, Inc.
    Executive VP
  • Paras Biopharmaceuticals Finland Oy
    Director Biologics a
  • Parexel International LLC
    Feasibility Strategy Associate Director
  • Parexel International LLC
    Director, Rare and Genetic Diseases
  • Parexel International LLC
    Vice President, Rare and Genetic Diseases
  • Parexel International LLC
    Associate Director, Events
  • Pathways To Trust
    Director of Patient Advocacy
  • Pathways To Trust
    Executive Director
  • Patient Advocate
    Patient Engagement Consultant
  • Patient Advocate
    Patient Advocate & Founder
  • Patient Caregiver
    Mom / Caregiver
  • PBC Patient-columnist
    PBC Patient Advocate
  • PennMedicine
    Physician Scientist
  • Perceptive Advisors
    Portfolio Manager, Venture
  • Periphagen Inc.
    Chairman
  • Perrigo
    Innovation Licensing Lead
  • Persephoni Bio
    Chief Medical Officer
  • Peter Cohen Foundation DBA EverythingALS
    Executive Director
  • PharmaEssentia
    Manager, Patient Marketing
  • PharmaEssentia
    Director, Patient Advocacy
  • PharmaEssentia
    Associate Director, Patient Marketing
  • pHARMING
    global pharmacovigilance associate
  • PharSafer
    CEO
  • PharSafer
    Marketing Manager
  • Pharvaris
    Vice President, Global Evidence & Outcomes Research
  • Pharvaris
    Chief Medical Officer
  • Philly Cure HD
    Board Member
  • Pierre Fabre Pharmaceuticals
    Senior Director, Patient Advocacy & Disease States Initiatives
  • PMV pharma
    Head of PV
  • Polaryx Therapeutics
    Director, Regulatory and Clinical Affairs
  • PPD, Part of Thermo Fisher
    Sr Director Operations, Observational Studies and Real-World Evidence
  • Premier Research
    Vice President Medical Affairs
  • Premier Research
    Sr Vice President, Specialty Areas
  • Premier Research
    Vice President, Rare Diseases and Pediatrics
  • Premier Research
    Marketing
  • Prevail Partners LLC
    President
  • Probably Genetic
    Chief Executive Officer & Co-Founder
  • Project 8p Foundation
    Executive Director
  • Project 8p Foundation
    Science Program Coordinator
  • ProPharma
    Marketing
  • Pros Foundation
    Founder
  • Pros Foundation
    Founder
  • Purple Drop Therapeutics
    Co-Founder
  • Queen's University Belfast
    PhD Candidate
  • Quercis Pharma USA
    CEO
  • Quoiden
    CEO & Founder
  • Quoiden
    CEO & Founder
  • QurCan Therapeutics Inc.
    CEO
  • RA Capital Management
    Managing Director
  • Rady Children's Institute for Genomic Medicine
    Director, Strategic Partnerships
  • Rare Disease Company Coalition
    Chief of Staff
  • Rare Access Action Project
    Executive Director
  • Rare Access Action Project
    Director of Patient Engagement
  • Rare Access Action Project (RAAP)
    Associate
  • Rare Advocacy Movement
    Founder
  • Rare And Black
    Executive Director
  • Rare Disease Advisor
    Director of Advocacy Relations
  • Rare Disease Company Coalition
    Executive Director
  • Rare Disease Ghana Initiative
    Executive Director
  • Rare Disease Ghana Initiative
    Cooperate Affairs and Partnership Lead
  • Rare Disease Innovation and Advocacy Coalition
    Founder, Executive Director
  • Rare Disease Patient Advocate
    Founder/Rare Patient
  • Rare Disease Research Partners
    Head of the Clinical Trial Support Team
  • Rare Disease Research Partners
    Head of the Clinical Trial Support Team
  • Rare Disease Research, LLC
  • Rare Diseases
    Rare Disease Patient and Volunteer Federal Health Policy Lobbyist
  • Rare Epilepsy Network
    Director Of Research
  • Rare Patient Voice, LLC
    Director of Business Development
  • Rare Patient Voice, LLC.
    Senior Vice President
  • RARE Revolution
    Community Engagement Senior Associate
  • Rarecounseling.com
    Counseling Psychologist / Rare Dad
  • rareLife solutions, inc
    Senior Solutions Development Director
  • RareMoon Consulting
    Executive Assistant
  • RareMoon Consulting
    CEO/Co-Founder
  • RareUnyk
    CEO
  • RCP Venture Capital
    Managing Partner
  • RCP Venture Capital
    Managing Partner
  • ReadOn Tx
    Co-Founder
  • Reagan Udall Foundation for the F.D.A.
    Chief Executive Officer
  • Recurrent Respiratory Papillomatosis Foundation
    President
  • Regal Intel
    President
  • Regeneron
    Head of Global Pricing and Contracting Strategy
  • Remember The Girls
    Director of Programs
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    Board Member
  • Renu2 United
    Executive Director
  • Rescue 7: Firefighters for Patients
    Founder
  • Revio Therapeutics
    Co-founder / CSO
  • ReviR Therapeutics
    Exec Dir, Program Management
  • ReviR Therapeutics
    Chief Scientific Officer
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    Vice President
  • Rezolute Bio
    Chief Regulatory Officer
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    SVP Operations
  • Rezolute, Inc.
    VP Corporate Affairs
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    CEO & Founder
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    SVP, Clinical Operations
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    Founder
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    Clinical Solutions Partner
  • Rivia AG
    Clinical Solutions Partner
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    Clinical Solutions Partner
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    CSO
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    Researcher, Board member
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    Investor and CMC Advisor
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    Business Development
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    Relationship Coordinator, Scientific Advising
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    Executive Assistant
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    Pharmacist
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    Associate Professor
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    Clinical Research Director
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    Global Head, Science Policy
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    Distinguished Scientist
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    Global Head of Rare Diagnostics and Scientific Affairs
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    Global Head, Rare Diseases Research
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    TAH for Established Products, PV
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    SVP, Strategy
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    CEO / CIO
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    Vice President, International
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    Senior Vice President, Patient Affairs
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    President & CEO
  • Sciensus Pharma Services Limited.
    CEO
  • Sciensus Pharma Services Limited.
    SVP, Business Development
  • Sciensus Pharma Services Limited.
    Managing Director, Rare & Specialty
  • Sciensus Pharma Services Limited.
    Vice President of Rare Disease Strategy
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    Marketing Manager
  • Sciensus Pharma Services Limited.
    SVP, Rare/Specialty
  • Secarna Pharma
    VP Business Development
  • Secretome Therapeutics
    Vice President, Clinical Development
  • Seneca Therapeutics
    SVP of Operations
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    Manager
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    Chief Business & Commercial Officer
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    Marketing Manager
  • Shristae Therapeutics
    Founder
  • Sickle Cell Awareness
    Advocate
  • Sickle cell Intervention U.K
    Chief Executive Officer
  • Sickle Cell Patient Advocate
    Sickle Cell Advocate
  • Sickle Cell/Thalassemia Patients Network, Inc. (SCTPN)
    President
  • Sionna Therapeutics
    Sr. Director, Patient Advocacy
  • SITUS Foundation
    Founder & President
  • Situs foundation nonprofit
    RN
  • SLC6A1 Connect
    Chief Executive Officer and Founder
  • SMHS/MFA
    Executive Director, Clinical Research Operations
  • snoball
    test
  • snoball
    test
  • Society for Participatory Medicine
    Board Member
  • Society for Participatory Medicine
    board chair
  • Soleno Therapeutics
    VP Commercial Strategy, Analytics and Operations
  • Soleno Therapeutics
    VP Commercial Strategy, Analytics and Operations
  • Soleno Therapeutics
    Director
  • Soligenix
    CEO
  • Souffle Therapeutics
    VP Patient Advocacy and Professional Relations
  • Springhood Ventures
    Managing Partner
  • SRK Consulting
    Board Member
  • St Pancras Clinical Research
    Head of Business Operations
  • St Pancras Clinical Research
    Chief Executive Officer
  • St Pancras Clinical Research
    Chief Scientific Officer
  • State Of Minnesota
    Rare Disease Advisory Council Executive Director
  • Stealth
    Fractional CSO
  • Stealth Biotherapeutics
    Director Expanded Access Program and Registry
  • Stealth Biotherapeutics
    Executive Director, Market Access
  • Stronger Than Sarcoidosis
    President
  • subrosa Health & Capital
    CEO - subrosa OmicAI AG, Zug, Switzerland
  • subrosa Health & Capital
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  • Sunstone Partners
    Investor
  • Syntis Bio
    Assoc. Director
  • Takeda
    Head, Marketed Products, Global Medical
  • Takeda, Medical Affairs
    Medical Unit Head
  • Target ALS
    Patient Advocate
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    Co-Founder
  • Teon Therapeutics, Inc.
    CSO
  • Teon Therapeutics, Inc.
    Scientist
  • Teon Therapeutics, Inc.
    Biologist
  • Terrapinn
    Networking
  • Terrapinn Holdings Ltd
    Senior Operations Manager
  • The ALS Association
    Vice President of State Policy
  • The ALS Association
    Senior Vice President, Policy & Advocacy
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    Patient Advocate
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    Senior Partnerships Coordinator
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    Founder & Executive Director
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    President and Founder
  • The Josselyn Center
    Member, Board of Directors
  • The Just Society
    Co-founder
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    CSO
  • The MED13L Foundation
    MED13L Foundation Advocate
  • The MED13L Foundation
    Vice Chair
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    President & Founding Member
  • The MYT1L Project
    Board Member
  • The MYT1L Project Foundation
    Patient Advocate
  • The National Alliance for Rare Diseases Support - Malta
    Representative
  • The National Alliance for Rare Diseases Support - Malta
    Representative
  • The National Alliance for Rare Diseases Support - Malta
    Representative
  • The Patient Room
    Founder
  • The Progeria Research Foundation
    Chief Business Officer
  • The Rory Belle Foundation
    Research Director
  • The Sumaira Foundation
    Chief of Staff
  • The TBCK Foundation
    Director of Research Engagement
  • The TBCK Foundation
    Director of Administration
  • The Venture Collective
    Head of Life Science Investing
  • Tonix Pharma
    EVP and Site Head
  • trialport
    Chief Biopharma Strategy and Solutions Officer
  • trialport
    Founder/CEO
  • trialport
    Founder/CEO
  • TrilliumBiO
    Associate Director, Business Development and Translational Medicine
  • TrilliumBiO
    Vice President, Business Development and Translational Medicine
  • Tubb2a Foundation
    Founder
  • Tufts Medical Center
    Professor
  • UBC
    Director, Business Development
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    Associate Director, Patient Engagement
  • UCB
    Medical Strategy Lead
  • UCB
    CMO
  • UChicago Medicine & Wilsons Disease Association
    Oncology Nurse, WDA-MAP Coordinator, Rare Disease Advocate
  • UConn Health
    Research assistant
  • UHM Hospital
    Consultant Ophthalmologist
  • Ultragenyx Pharmaceutical
    Chief Executive Officer
  • UMass Cahn
    MD
  • Unboxed Psychology
    Director Patient Engagement
  • Unboxed Psychology
    Director Patient Engagement
  • Unboxed Psychology
    Director
  • Uncommon Cures LLC
    Chief Executive Officer
  • UNION therapeutics A/S
    CEO/CEOO
  • uniQure
    Sr. Director ClinOps
  • United Therapeutics
    Assoc. Director Clinical Oversight and Systems
  • Universal Health insurance Authority-UHIA
    Health Economist
  • Universidad del Valle
    Professor
  • University of California at Berkeley
    Scientific Director, Innovative Genomics Institute, Professor, Department of Molecular & Cell Biology
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    Postgraduate
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    Professor
  • Unravel Biosciences
    Chief Scientific Officer
  • Unravel Biosciences
    Business Development Manager
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    Executive Director
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    President
  • Uriel E Owens Sickle Cell Disease Association
    Secretary
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    Executive Vice President of Health & Research
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    Volunteer Advocate
  • Usher 1F Collaborative
    Board Chair
  • UW Health
    Chief Innovation Officer
  • UZ Ghent University Hospital, ERN ReCONNET
    Head of Pediatric Youth Advice Council Nephrology, Project Manager CPMS for ERN ReCONNET
  • Vanderbilt University Medical Center
    Senior Statistical Genetic Analyst
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    SVP Patient Engagement
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    EVP Patient Engagement & Rare Disease
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    Senior Research Scientist
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    CEO
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    Vice President, Patient Advoacy
  • Vitaccess
    CEO & Founder
  • Vitaccess
  • Voyager Therapeutics
    Senior Director, Corporate and Business Development
  • VOZ Advisors
    Advisor
  • vTv Therapeutics
    EVP, Chief Scientific Officer
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    Chief Business Officer
  • Weill Cornell
    Professor
  • Weill Cornell / NYU Langone / SMA Foundation
    PhD Student, Research Coordinator and Patient Advocate
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    Director, Project Management
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    Business Development Manager
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    VP, Global Medical Affairs
  • Wilson Disease Association
    President
  • WinQure Medicine
    CEO & Co-founder
  • Workomics
    Co-lead and Principal
  • Yaya Foundation for 4H Leukodystrophy
    Research director
  • Yellow Brick Road Project
    PAG member
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    CEO-Director-Chief Momvocate
  • Zeal Specialty Pharmacy
    CEO
  • Zeal Specialty Pharmacy
    CEO
  • ZoSaLa Pharma
    CEO
  • ZS
    Principal
  • ZS Associates
    Strategy Insights & Planning Consultant
  • ZTTK SON-Shine Foundation
    Executive Director

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