Patient Advocacy Pass

Are you a patient advocacy group interested in attending World Orphan Drug Congress USA 2020?

 

We are offering a limited number of complimentary VIP passes to patient groups.   To apply for a Patient Advocacy pass, please email Semen Sen at  Semen.Sen@terrapinn.com .  

 
This complimentary VIP pass to the three-day event will allow you to:
  • Full access to all conference activities on April 29 - May 1
  • 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 ($3,200 waived) and you are responsible from your own travel and hotel arrangements. 
 
To apply for a Patient Advocacy pass, please email Semen Sen at  Semen.Sen@terrapinn.com . Please note:
  • We offer only one (1) complimentary pass per patient group
  • Beneficiaries must be employees of a patient advocacy organization and have no solution provider or consultancy affiliation
  • Passes are non-transferrable and only valid to the individual originally assigned in the registration
 
Please note, only 200 guest passes are given annually to patient advocacy groups to attend the conference so make sure to reserve your pass now!

 

Patient Advocacy Sponsors:

 

 

Featured Rare Disease Advocacy Speakers Include:

 

Patient Groups attending in 2020:

 

  • A.T. Childrens Project
  • ADNP Kids Research Foundation
  • Adult Polyglucosan Body Disease Research Foundation
  • Advocacy & Awareness for Immune Disorders Association
  • Alagille Syndrome Alliance
  • Alport Syndrome Foundation
  • Americas Health Foundation
  • Angelman Syndrome Foundation
  • Aplastic Anemia and M.D.S. International Foundation Inc
  • Autism Science Foundation
  • Axis Advocacy
  • Barth Syndrome Foundation
  • Batten Disease Support and Research Association
  • Ben's Friends
  • Bow Foundation
  • Bridge the Gap -SYNGAP 
  • Canadian Organization For Rare Disorders
  • Canadian Organization for Rare Disorders 
  • Caregiver Action Network
  • Cauda Equina Foundation
  • CDH International
  • Children's Tumor Foundation
  • Circadian Sleep Disorders Network
  • Cooley's Anemia Foundation
  • Costello Syndrome Family Network
  • CRMO Foundation
  • CSNK2A1 Foundation
  • Cure Blau Syndrome Foundation
  • Cure VCP Disease
  • CureDuchenne
  • Cures Within Reach
  • CureSPG50
  • Cushing Support and Research Foundation
  • Cystic Fibrosis Foundation
  • Dreamsickle Kids Foundation
  • Dup15q Alliance
  • E.C.D. Global Alliance
  • Einstok Born
  • EURORDIS
  • FamilieSCN2A Foundation
  • FCS Foundation
  • Fibromuscular Dysplasia Society of America
  • Fibrous Dysplasia Foundation
  • Fighting For Kaiden Fondation
  • Foundation for Angelman Syndrome Therapeutics 
  • Foundation For Prader Willi Research
  • Foundation for Sarcoidosis Research
  • FOXG1 Research Foundation
  • Friedreich's Ataxia Research Alliance
  • FSH Society Inc
  • Glut1 Deficiency Foundation
  • Hairy Cell Leukemia Foundation
  • Helping Hands for GAND
  • Hereditary Angioedema Association
  • Highway of Hope
  • Hopeful Science
  • International Fibrodysplasia Ossificans Progressiva Association
  • International Prader-Willi Syndrome Organization
  • International Waldenstrom's Macroglobulinemia Foundation
  • Jett Foundation
  • Jonah's Just Begun
  • KLS Foundation
  • Little Hercules Foundation
  • Little Miss Hannah Foundation
  • Liv4TheCure
  • Loulou Foundation
  • Lymphangiomatosis & Gorham's Disease Allliance
  • Malta National Alliance for Rare Diseases
  • Mast Cell Hope
  • Mila's Miracle Foundation
  • Miracles For Mito
  • MLD Foundation
  • Muscular Dystrophy Association
  • Muscular Dystrophy UK
  • National Alliance of People with Rare Diseases - Bulgaria
  • National Ataxia Foundation
  • National Fragile X Foundation
  • National M.P.S. Society
  • National Niemann Pick Disease Foundation Inc
  • Neuromuscular Disease Foundation
  • Noonan Syndrome Foundation
  • NORD
  • Osteogensis Imperfecta Foundation
  • Patient Airlift Services
  • Perthes Kids Foundation
  • Phelan-McDermid Syndrome Foundation
  • Progeria Research Foundation
  • Project Alive
  • PTEN Hamartoma Tumor Syndrome Foundation
  • Rare Bone Disease Alliance
  • Rare Kids Network
  • Reccurent Respiratory Papillomatosis Foundation
  • Reflex Sympathetic Dystrophy Syndrome Association RSDSA
  • Rubinstein Taybi Syndrome Childrens Foundation
  • Sara's Cure
  • Sarcoidosis of Long Island
  • Sickle Cell 101
  • Sickle cell intervention U.K
  • Sickle Cell Thalassemia Patients Network
  • Sickled Not Broken Foundation
  • Simons Foundation Clinical Research Associates
  • SMA Europe 
  • Snyder Robinson Foundation
  • Team Sanfilippo Foundation
  • Texas Rare Alliance
  • The Aarskog Foundation
  • The American Porphyria Foundation
  • The Chandler Project, Inc
  • The Jansens Foundation
  • The Myositis Association
  • The Sickle Cell Association of New Jersey
  • The Sturge-Weber Foundation
  • The Yellow Brick Road Project
  • Transient Global Amnesia Project
  • Tuberous Sclerosis Alliance
  • U.S. Food and Drug Administration (FDA)
  • United Leukodystrophy Foundation
  • United Spinal Association
  • We CARE Journey Malaysia
  • Wylder Nation Foundation