This year, Rare Disease Day is a celebration of what it is to be “rare” on the rarest day of all—February 29th. The official 2020 theme is Rare is Many. Rare is Strong. Rare is Proud.
At Pfizer Rare Disease, rare is all of these things and more. Rare is personal. Rare is inspiration, and rare is innovation.
Our Chief Development Officer, Brenda Cooperstone, knows first-hand what it means to have a loved one living with a rare disease. Her father has transthyretin amyloid cardiomyopathy (ATTR-CM), a devastating rare disease leading to congestive heart failure and ultimately death. From Brenda’s medical training and professional experience at Pfizer, she was able to identify his risk factors and help him get an early diagnosis to enable treatment that will make a difference for him. His diagnosis inspires her, personally and professionally, every day. The personal connection inspires her, in turn, to continue research and raise awareness about rare diseases so that people living with a rare disease, like her father, can have more time with loved ones.
For others at Pfizer Rare Disease, like Bob Smith, Senior Vice President, Global Gene Therapy Business, working in rare disease has inspired him to never settle for the status quo—always seeking out innovation and aspiring to deliver breakthrough treatments to more patients, across more rare diseases, in more places around the globe. That’s why he and his colleagues are working day in and day out to unlock the potential of genes as medicine to pioneer breakthroughs that change patients’ lives—today and in the future.
Please join us and help to “reframe rare” this Rare Disease Day by spreading awareness and by sharing with your loved ones what “Rare is…” means to you.
To learn more ways on how you can get involved and support the rare disease community visit rarediseaseday.org.