Rare Disease Advocacy World 2018


Rare disease research and orphan drug development cannot be advanced without the effective incorporation of the patient’s voice and the collaborations with patient advocacy groups. Rare Disease Advocacy World features what is most innovative in the way that patient centricity is incorporated into developing new therapies for rare diseases. From patient-industry collaborations, to the use of patient reported outcomes and evolving regulatory requirements for patient engagement, RDAW is the platform for multiple stakeholders to discuss patient’s role in advancing therapies for rare diseases.


Key topic areas in 2017 included:

  • Influencing drug development

  • Patient centric drug developement

  • Patient Recruitment

  • Patient reported outcomes

  • Advocacy's influence in policy and regulation

  • Patient industry partnerships

  • Newborn screening and early diagnosis

  • Expanded access and compassionate use programs

  • Digital patient engagement & partient support programs

  • National patient organizations case studies from around the world 


World Orphan Drug Congress USA 2018




Is your company interested in sponsoring/ hosting a workshop?

Contact Andre Singer at andre.singer@terrapinn.com
or  +1 646 619 1797