In observance of World Rare Disease Day 2018, biopharmaceutical company Incyte has partnered with Academy Award winning filmmaker Cynthia Wade to develop a series of short documentary films to raise awareness for myeloproliferative neoplasms (MPNs).
With this film series, Incyte hopes to highlight some of the challenges faced by people living with MPNs and the dramatic impact that these blood cancers can have on patients’ lives, and the lives of family members, friends and caregivers.
“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,” said Hervé Hoppenot, Chief Executive Officer, Incyte in a press release
MPNs are a collection of cancers in which undeveloped blood cells in the bone marrow do not fully mature, and are prohibited from maturing into healthy blood cells.
MPNs include a wide array of other blood disorders, including: myelofibrosis, polycythemia vera, and essential thrombocytosis. Patients with these conditions have been reported to be at increased risk for thrombotic events. Pharmacologic treatment has been proven to stabilize the blood counts, however, they generally provide only partial symptomatic improvement.
In the first short film of the series, “Beyond Blue,” Barbara, a woman who was diagnosed with an MPN more than two decades ago, sheds light on how people living with a rare disease are likely experiencing unseen symptoms; Barbara describes it as carrying an “80-pound invisible blanket.”
“I’m hoping this film will help others understand the many different aspects of living with a rare disease, tell them about what might be invisible to the eye and to empower patients to have better conversations with their doctors and their loved ones in an effort to live their best life and live out their own stories,” she says in the documentary.
MPNs can afflict anyone at any age, however, they are more typical in older adults. Per the MPN Research Foundation
, estimates of the prevalence of MPNs vary, but analysis of claims data suggests there may be as many as 200,000 people in the U.S. living with myelofibrosis, polycythemia vera or essential thrombocytosis.
In addition to the launch of the documentary series, Rare Disease Day also marks the opening of nominations for the 2018 MPN Heroes Recognition Program, sponsored by Incyte and CURE Media Group, publishers of CURE
magazine. The sixth annual event will honor individuals and organizations that contribute to bringing understanding and strength to those living with MPNs, and accept nominations for the award through September 13, 2018.
To learn more about the program or to submit a nomination, visit mpnheroes.com
For more from Rare Disease Day, follow Rare Disease Report