NEW YORK, Sept. 20, 2012 /PRNewswire/ — National nonprofit CancerCare, along with the advocacy associations that comprise the MPN Coalition, recognizes today as the first ever national Myelofibrosis Awareness Day. This day of recognition serves as the commencement of activities designed to create awareness of myelofibrosis (MF). The theme of the day, Elements of Empowerment, encourages those affected by MF to become knowledgeable about the disease; be partners in their health care; and help them find strength in association with other patients.
MF,a progressive, potentially life-threatening blood cancer with limited treatment options, belongs to a group of diseases known as myeloproliferative neoplasms (MPNs). Patients with MF suffer a high disease burden including debilitating symptoms that can significantly affect their quality of life. MF is a rare disorder which affects as many as 18,000 people in the U.S.
A new website, www.myelofibrosisawareness.org, is being launched as part of this initiative. The site serves as an online hub with tools and resources to help patients and healthcare professionals better understand MF symptoms and treatment options. The EMPOWER Toolkit—Empowering Myelofibrosis Patients with Education & Resources—has also been developed to assist local organizations in hosting MF awareness events throughout the year.
“For more than 68 years, CancerCare has provided free support services to help people coping with all types of cancers – including rare forms such as myelofibrosis, which are often not well-known or understood,” said Helen H. Miller, LCSW, CEO of CancerCare. “Today, along with other members of the MPN Coalition, we celebrate the collaborative efforts and accomplishments which have led to better understanding of MF and new treatment options for this rare and life-threatening blood cancer. We pledge to continue working diligently to ensure that all necessary resources are available to cancer patients who need them.”
As part of the organization’s ongoing efforts to empower MF patients, CancerCare recently initiated a free Connect Education Workshop series on “Living with Myelofibrosis.” The online workshops include the participation of leading experts, who are available to answer patients' and caregivers' questions. Podcasts of these sessions are available online at http://www.cancercare.org/connect_workshops following the conclusion of the live sessions.
“We have a strong history of collaboration with fellow advocacy organizations to support cancer patients and caregivers, and we are proud to be a leading member of the MPN Coalition, helping those affected with MF access the resources they need,” continued Miller.
About Myelofibrosis Myelofibrosis (MF), a progressive, potentially life-threatening blood cancer with limited treatment options, belongs to a group of diseases known as myeloproliferative neoplasms (MPNs). Patients with MF suffer a high disease burden including debilitating symptoms that can significantly affect their quality of life. Symptoms include abdominal discomfort, an early feeling of fullness, pain under the left ribs, itching, night sweats, and bone or muscle pain. MF is a rare disorder which affects approximately 16,000-18,500 people in the U.S. In November 2011, the first treatment for MF was approved by the FDA.
About the MPN Coalition The MPN Coalition came together with one primary goal in mind: to provide a forum for discussion of and action on needs and challenges faced by those living with and affected by MPNs, including Myelofibrosis. The coalition aims to create greater awareness of these rare diseases and to enhance education and access to care. Coalition members include CancerCare, Cancer Support Community, MPN Education Foundation, MPN Research Foundation, National Organization for Rare Disorders, The Leukemia & Lymphoma Society.