On Feb. 28, 2017, WE will be supporting patients and advocates on Rare Disease Day. Sponsored by patient advocacy group Global Genes, Rare Disease Day aims to bring awareness to not only the 7,000 rare diseases that exist, but to the people affected by them and their stories.
As healthcare storytellers, we strive to understand patient narratives and amplify their voices. Patient stories provide the world with a true understanding of the patient experience — something that is often missing from medical literature and the scientific lens that disease education is frequently written with. Encouraging the pharmaceutical/biotech industry to speak with, work with and share information with patients not only promotes communication, confidence and transparency, it also opens the door for everyone involved to learn new things and gain more perspective. The industry needs to ensure that all patients receive the levels of support they deserve, because patient stories can, have and will continue to change lives.
As an agency that understands the intersection of healthcare and technology, it is crucial that we identify not only the change the healthcare space is experiencing, but also the opportunities that these changes provide — driven by the advancement of technology and social media. The industry has felt a surge to focus on patients from the start of clinical research, to approval and to the prescription of new medicines. The importance of patient quality of life and quality of care has heightened, often driven by social media. Crowd-sourcing campaigns and the use of social media as a form of storytelling have played a significant role in rare disease achievements, most notably in the recently passed 21st Century Cures Act. The people fueling these efforts exhibit determination, perseverance and courage and demonstrate the resilience of the rare disease community.
Please join us in recognizing the importance of this topic. To learn more about Global Genes, visit https://globalgenes.org/. WE #CareAboutRare