Rare Disease Advocacy World 2020

 

 

Rare Disease Advocacy World will feature advocacy program, patient groups, companies & agencies discussing some critical topics including patient data considerations, genetic testing and genomic sequencing and the evolving role of patient groups.

 

Patient Advocacy Sponsors:

 

 

Featured Rare Disease Advocacy Speakers Include:

 

\Are you a patient advocacy group interested in attending or speaking at World Orphan Drug Congress USA?
Contact Andre at +1 646 619 1797 or andre.singer@terrapinn.com

 

REGISTER NOW

 

Patient Groups that attended in 2019:

 

• 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