What is Rare Disease Day?
As scientific breakthroughs have emerged and modern forms of communication have connected patients, specialists, policy makers, activists, and support organizations across the word, the Rare Disease Community has grown and so has its passion to raise awareness in support of rare disease research and patient advocacy. In 2008, EURORDIS, a non-profit patient alliance of now nearly one thousand organizations from 73 countries, wanted to set aside a special day for combined efforts to raise awareness about the prevalence of rare diseases. Leap Day was specifically chosen for this special designation as it is a “rare” day that occurs only once every four years.
The first Rare Disease Day was celebrated on February 29th, 2008 by EURORDIS and its Council of National Alliances across Europe. The tradition quickly spread around the world, amplifying the voice of the rare disease community. Over the last thirteen years, the final day of February has been a day of hope, celebration, and awareness for people and families living with the daily repercussions of rare diseases. It is a chance for advocates, policy makers, and healthcare organizations to celebrate the wins; the research performed, the medications launched, and the patients who have received hope and the chance to live a more healthy life; while recognizing that there is much more research to perform, many more medications to launch, and still many more patients who are living with rare diseases desperate for answers.
PANTHERx Rare: Where Every Day is Rare Disease Day
PANTHERx Rare, now a part of Centene’s Envolve Pharmacy Solutions, is the one of the largest and fastest growing rare pharmacies in the United States. We dispense nearly two dozen rare and orphan medications while supporting tens of thousands of patients across the country through our proprietary RxARECARE® programs and SWFT® technology systems.
“We are constantly evolving, reimagining old programs and creating new ones for the benefit of our patients and their families,” said Rob Snyder, President of PANTHERx Rare. “We have cultivated teams of people who understand operations, business, leadership, and most importantly, rare diseases. Our associates provide every PANTHERx patient with a unique combination of clinical knowledge and personal empathy. We are so invested in the lives of our patients that their wins are our wins—at PANTHERx, every day is Rare Disease Day and we celebrate it.”
PANTHERx offers dozens of enhanced fully customizable services to our patients and partners ranging from rapid refill capabilities and patient text notifications to custom fulfillment and shipping solutions and tailored data analytics suites. Our technical and clinical capabilities shine in each of our programs, but it is our personal touch, our ethos of sincere care, that sets PANTHERx apart.
Rare Disease Day: Participate with PANTHERx
Visit rarediseaseday.org to find information about the thousands of events happening around the world on the last day of February. Follow PANTHERx on social media and like, comment on, and repost our Rare Disease Day posts to spread the word about this important day with your family, friends, and connections.
To download your own digital and printable media, please visit https://rarediseaseday.org/downloads
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About PANTHERx Rare
PANTHERx Rare, a Centene Envolve Pharmacy Solutions company, transforms lives by delivering medicine breakthroughs, clinical excellence, and access solutions to patients afflicted with rare and devastating conditions. Although the incidence is as common as diabetes, less than 7% of the 7,000 known rare and devastating disorders have an approved therapy. Changes in federal policy and advances in science have led to a surge in FDA orphan drug approvals, providing tremendous hope to the rare disease community.
PANTHERx was recently awarded Specialty Pharmacy of the Year by the National Association of Specialty Pharmacy (NASP) and earned the inaugural Accredited Distinction in Rare Diseases and Orphan Drugs from the Accreditation Commission for Health Care (ACHC). PANTHERx is a three-time winner of the prestigious MMIT Patient Choice Award, including the 2020 honor. PANTHERx is headquartered in Pittsburgh, Pennsylvania, licensed in all 50 states, and holds accreditations from URAC, NABP, and ACHC.