People often ask me what’s the best part of my job. I tell them, bar none, it’s getting to know our patients and hearing their courageous and personal stories of living with a rare disease.
Names like Lori, Terry, Alex, Michael and so many others come to mind.
Their stories of strength and perseverance inspire the work we do every day and compel us to keep innovating so we can deliver on our promise to help other patients like them. While this is a year-round endeavor for each of us at CSL Behring, February is always a special time of year to take pause and reflect on the work we do.
That’s because this month we come together with the rare disease community around the globe to observe Rare Disease Day, held on the last day of February every year. Along with the National Organization for Rare Disorders (NORD) in the U.S. and its sister organization, EURORDIS-Rare Diseases Europe, we share the goal of raising awareness, strengthening the community among rare disease patients and pledging our continued action in the fight against rare diseases.
In the United States alone, NORD estimates that more than 7,000 rare diseases affect 25-30 million Americans. That means one in 10 Americans are suffering from rare diseases and more than half of them are children. Too often people with rare diseases struggle to receive a proper diagnosis, find information or get the proper treatment.
At CSL our Values of patient focus, superior performance, innovation, integrity and collaboration underscore our commitment to support the rare disease community — not only through our science and therapies, but also through our partnerships and collaborations with academic institutions and patient advocacy groups.
In keeping with the theme of this year’s Rare Disease Day, “Show Your Stripes,” we’ll be sharing stories throughout the month on our company website and social media channels that demonstrate the unique qualities of both our patients and our people. If you are a patient, caregiver or ally of the rare disease community, I hope you will join us and #ShowYourStripes on Rare Disease Day.
Celebrating our patients always makes Rare Disease Day special. As CEO, I’m also equally honored and humbled to recognize the more than 25,000 of our Chief Patient Officers working around the world who carry out our commitment every day.
It’s because of our employees’ hard work, determination and passion for patients in the rare disease community that we continue to drive scientific innovation and ensure our promises are never rare.