Are you a patient advocacy group interested in attending World Orphan Drug Congress USA 2019?


We are offering a limited number of complimentary VIP passes to patient groups.   To apply for a Patient Advocacy pass, please email .  

This complimentary VIP pass to the three-day event will allow you to:
  • Full access to all conference activities on April 10th, 11th and 12th. 
  • Make global connections with other patient groups, regulators, payers and pharma/biotech stakeholders that can help support your mission and further position your organization
  • Strengthen your bonds with industry stakeholders and achieve collaborations that can help accelerate the path to treatments
  • Hear about the FDA’s and industry’s patient focused drug development initiatives and partnerships and how you can benefit from them
  • Network, engage, learn and keep contributing to a multi-stakeholder effort to accelerate orphan drug development; as well as schedule 1-on-1 meetings with any attendee of the congress by using the event networking system
VIP invitation covers your registration fee ($2,000 waived) and you are responsible from your own travel and hotel arrangements. 
To apply for a Patient Advocacy pass, please email   
Please note, only 100 guest passes are given annually to patient advocacy groups to attend the conference so make sure to reserve your pass now!
Patient Advocacy Sponsors

Patient Groups already confirmed to attend include: 
  • Project Alive
  • Hannah's Hope Fund for GAN
  • AT Children's project 
  • TargetCancer Foundation
  • Parent's Project Muscular Dystrophy
  • National MPS Society
  • Genetic Alliance UK
  • The Children’s Tumor Foundation
  • Epilepsy Foundation
  • Curing Retinal Blindness Foundation
  • Phelan-McDermid Syndrome Foundation
  • MLD Foundation
  • Sickle Cell Thalassemia Patients Network
  • International Waldenstrom's Macroglobulinemia Foundation
  • PKD Foundation
  • Fibrous Dysplasia Foundation
  • MLD Foundation
  • Americas Health Foundation
  • FamilieSCN2A Foundation
  • International Waldenstrom's Macroglobulinemia Foundation
  • Friedreich's Ataxia Research Alliance
  • Defeat MSA
  • Dup15q Alliance
  • CDH International
  • Transient Global Amnesia Project
  • National Ataxia Foundation
  • Tuberous Sclerosis Alliance
  • Lung Transplant Foundation
  • Phelan-McDermid Syndrome Foundation
  • HSAN1E Society
  • Rare and Undiagnosed Network
  • The American Porphyria Foundation
  • The RYR-1 Foundation
  • Project 8p
  • ALPE Foundation
  • National Fragile X Foundation
  • Caregiver Action Network
  • The Sickle Cell Association of New Jersey
  • Ben's Friends
  • Axis Advocacy
  • American Behcet's Disease Association
  • Costello Syndrome Family Network
  • Rare Disease Nonprofit Workshop
  • Casimir
  • Myasthenia Gravis Foundation of America
  • Bow Foundation
  • Autism Science Foundation
  • Adult Polyglucosan Body Disease Research Foundation
  • Little Hercules Foundation
  • RSDSA 
  • Highway of Hope
  • Team Sanfilippo Foundation
  • The Sturge-Weber Foundation
  • Rubinstein Taybi Syndrome Childrens Foundation
  • Sickle Organic Acidemia Association 
  • Circadian Sleep Disorders Network
  • Lymphangiomatosis & Gorham's Disease Alliance
  • The Marfan Foundation
  • Organic Acidemia Association
  • The Myositis Association
  • Kleine-Levin Syndrome Foundation
To apply for a Patient Advocacy pass, please email