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WASHINGTON – (Jan 30, 2019) –The Cancer Support Community (CSC), a global nonprofit, is launching a unique research study focused on individuals diagnosed with Acute Myeloid Leukemia (AML), a cancer of the blood and bone marrow which accounts for approximately 19,520 new cases of cancer each year (American Cancer Society, 2018).

“AML is a serious diagnosis and patients require immediate and intensive treatment. Because of the acute nature of the disease, there is much to be learned about the patient and caregiver experience with AML,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “This new study gives us the opportunity to learn more from patients about the full spectrum of their experience and allows us to address their concerns through our support services, educational materials, and by informing public policy.”

The Cancer Experience Registry: AML will explore the patient experience on several different topics, such as, their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its partners.

The Cancer Experience Registry: AML was created thanks to support from inaugural sponsors, Astellas Pharma Inc. and Jazz Pharmaceuticals. First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 13,000 patients, survivors, and caregivers. The Cancer Experience Registry: AML is the 11th in a series of specialty registries hosted by CSC.

“We are proud to work with CSC to create an important resource to help AML patients and their loved ones navigate the physical and emotional challenges of this rapidly progressing and life-threatening blood cancer,” said Steven Benner, M.D., senior vice president and global therapeutic area head, Oncology Development, Astellas. “By generating actionable data to inform programming and scientific discourse, we believe this registry may help contribute to creating a brighter future for AML patients.”

“At Jazz, our passion for addressing patients’ unmet needs drives our day-to-day activities and fuels our commitment to raising awareness about conditions like AML,” said Allen Yang, M.D., Ph.D., vice president and acting chief medical officer of Jazz Pharmaceuticals. “We are pleased to support this ground-breaking hematology initiative and we thank the patients and caregivers for their willingness to share their experiences with AML.”

About the Cancer Support Community

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization includes an international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation. For more information, please call the toll-free Cancer Support Helpline at 888-793-9355, or visit So that no one faces cancer alone®

About Astellas
Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. For more information, please visit our website at

About Jazz

Jazz Pharmaceuticals plc (Nasdaq: JAZZ), a global biopharmaceutical company, is dedicated to developing life-changing medicines for people with limited or no options, so they can live their lives more fully and redefine what is possible. As a leader in sleep medicine and with a growing hematology/oncology portfolio, Jazz has a diverse portfolio of products and product candidates in development, and is focused on transforming biopharmaceutical discoveries into novel medicines. Jazz Pharmaceuticals markets Xyrem® (sodium oxybate) oral solution, Erwinaze®(asparaginase Erwinia chrysanthemi), Defitelio® (defibrotide sodium) and Vyxeos® (daunorubicin and cytarabine) liposome for injection in the U.S. and markets Erwinase®, Defitelio® (defibrotide) and Vyxeos® 44 mg/100 mg powder for concentrate for solution for infusion in countries outside the U.S. For country-specific product information, please visit For more information, please visit and follow us on Twitter at @JazzPharma.