Description
Welcome to the inaugural issue of Patients as Partners.
Building on the success of the Patients as Partners US and EU conferences, this newsletter highlights the many voices that are doing incredible work to vastly improve the patient experience and involvement in medicine development. Enjoy this first issue!
In the newsletter’s inaugural issue, we are pleased to share the following interviews:
Tina Aswani Omprakash, patient advocate and blogger, discusses her work publicizing the benefits of clinical trials from a patient perspective.
Chip Bell, PhD, customer loyalty guru, talks about the ways pharma companies can engage with their patients throughout the COVID-19 pandemic.
Fernando Albertorio, PhD, advocate and entrepreneur, discusses his advocacy in the Hermansky-Pudlak Syndrome and visually impaired communities.
Christeen Moburg, Head of Patient Advocacy at Sangamo Pharmaceuticals, highlights the pillars of patient advocacy in the genomic medicine community.
Neena Nizar, EdD, Founder and Executive Director of the Jansen’s Foundation, discusses her path to a Jansen’s Metaphyseal Chondrodysplasia diagnosis and starting a rare disease foundation.
We also include coverage of the Patients as Partners 2019 FDA panel, featuring representation from CDER, CBER and CDRH; and a write-up of a Patients as Partners advisory meeting on the challenges COVID-19 has posed and the opportunities for patient empowerment.
Enjoy the inaugural issue.
