Incyte Corporation (NASDAQ:INCY) is one of the many institutions, which have taken an active role in advocating the recognition of Rare Disease Day 2018. The biopharmaceutical company was also joined by the National Organization for Rare Disorders (NORD), the European Organization for Rare Diseases (EURODIS). The activity brings together patients, physicians, caregivers as well advocates and together they honor close to 200,000 individuals in the U.S. living with myeloproliferative neoplasms (MPNs).
MPNs are categorized as rare blood cancers. They can strike anyone at any age but more often than not, they diagnosed in seniors above the age of 60. The common MPNs are myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). They result from the unusual development and working of the bone marrow cells.
This year’s Rare Disease Day theme was ‘Patient Voice’
The Rare Disease Day has a global recognition. It is part of the ongoing educational efforts aimed at raising awareness, which in return inspires patients. Caregivers, advocates, and organizations are encouraged to be compassionate to those impacted by these under-recognized blood cancers. Incyte has also gone to the point of collaborating with CURE in upholding the MPN Heroes Recognition Program, which is celebrating its 5th birthday.
The program recognizes individuals and organizations who have played an active role in making a difference in the community. Finola Hughes, a character on General Hospital is one of those who has led their voices in helping people understand the influence of MPNs.
Other initiatives, which will bring understanding and strength to those living with MPNs
Together with Cynthia Wade, Academy Award® winning filmmaker, Incyte will be preparing a series of short documentary films, which will bring more understanding to the people. The film will single out various challenges, which people living with a rare disease have to ensure.
There is a first short film known as “Beyond Blue”. It talks about Barbara’s experiences after being diagnosed with an MPN over twenty years ago. The rare disease Day now opens doors to the 2018 MPN Heroes Recognition Program nominations which recognize individuals and organizations who keep the victims of MPNs going.