Incyte Corporation joined the National Organization for Rare Disorders (NORD), the European Organization for Rare Diseases, and other rare disease health organizations and advocates in recognizing Rare Disease Day 2018.
“Today we join hands with patients, physicians, caregivers and advocates to honor those with rare diseases across the globe, including the 200,000 individuals in the U.S. living with a group of rare blood cancers known as myeloproliferative neoplasms (MPNs),” said Hervé Hoppenot, CEO of Incyte, which is based near Wilmington.
Incyte supports efforts to raise awareness and improve diagnosis and treatment for those affected by MPNs, a group of rare chronic, progressive blood cancers, which include myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). The conditions are the result of the abnormal development and functioning of bone marrow cells that produce the body’s blood cells. Although these progressive cancers can strike at any age, they are more commonly diagnosed in adults over the age of 60.
Incyte’s leading drug is Jakafi, which is used in blood cancer treatment.
This year, as part of its ongoing efforts to raise awareness of MPNs, Incyte is partnering with Cynthia Wade, Academy Award winning filmmaker in the Documentary Short Subject category, to develop a series of short documentary films. The film series is intended to highlight some of the challenges people face living with MPNs and the impact these blood cancers can have on patients’ lives, families, friends and caregivers.
“Beyond Blue,” the first short film released in the series, tells the story of Barbara, a woman who was diagnosed with an MPN over 20 years ago.
Barbara’s experience shines a light on how people living with a rare disease may experience unseen symptoms, or, as Barbara puts it, “the 80-pound invisible blanket” that she carries. To watch “Beyond Blue” click on video above.
Rare Disease Day also marks the opening of nominations for the 2018 MPN Heroes® Recognition Program, which honors the individuals and organizations that contribute to bringing understanding and strength to those living with MPNs. To learn more about the program or to submit a nomination, visit www.MPNHeroes.com.
