Rare Disease Day 2015: How Rare Disease is Shaping the Future of Healthcare

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Today is Rare Disease Day 2015, an international advocacy day to focus on the daily lives of patients, families and caregivers who are living with a rare disease. Rare disease communities have been responsible for the reinvention of many aspects of our healthcare system are truly paving the way for precision medicine.

We Are All Zebras

Progress in treating rare diseases has been accelerated by advancements in our knowledge of molecular biology, genetics and epigenetics; new technologies such as next-generation sequencing; and the use of social media and mobile devices. These same advancements are driving the future of medicine and healthcare.

This week Wendy White, mother of a child with a rare disorder and founder of Siren Interactive, a rare disease marketing agency that finds patients with rare diseases and connects them to clients’ brands, wrote that President Obama’s Precision Medicine Initiative publicly acknowledges what people in the rare disease community already knew: the future of medicine will be targeted treatments for subpopulations.

Wendy writes that rare diseases are where precision medicine was born.

The skills that rare disease patients and caregivers have had to develop to be successful will be useful for all of us to adopt as we move forward into this brave new world of healthcare. Take, for example, the empowered patient movement made up of active and educated health seekers who take charge of their own care. Consider the concept of team science—with patients themselves driving not only the clinical endpoints, but also the research itself. As the Precision Medicine Initiative moves forward, I suspect that rare disease communities will continue to have an important role to play because of the immense knowledge they can contribute.

In honor of Rare Disease Day 2015, Siren Interactive has released an infographic that explains how rare disease communities are playing a leadership role in the development of precision medicine. Check it out below.

Rare Disease Zebras 2015

Source: Siren Interactive

About the Author

Jenny Jessen is Principal at Highlight Health Media, which publishes Highlight HEALTH. She is also a senior writer at Highlight HEALTH.