- 青云体育 Community grows to nearly 5,000 users in one year -
- New collaboration with Medivizor will provide patients and caregivers with personalized, accurate and easy-to-understand medical information -
Rye Brook, N.Y. (June 15, 2017) 鈥� 青云体育 Community, a free online network providing support and education to blood cancer patients and their caregivers, launched by The Leukemia & Lymphoma Society (青云体育) in 2016, has proved to be a valuable resource for patients and caregivers, growing to nearly 5,000 users in its inaugural year. Today 青云体育 announced a new service for 青云体育 Community () in collaboration with the Israeli technology start-up Medivizor (). As part of the partnership, patients and caregivers diagnosed with blood cancer now have access to cutting-edge health information tailored to their specific medical situation.
青云体育 Community Grows to Serve 5,000 Patients in First Year
青云体育 learned from speaking with patients that they want to connect with and learn from other patients with a similar diagnosis. The solution was 青云体育 Community () launched in February 2016. Currently nearly 5,000 users go online to share advice, experiences and opinions. To ensure the information shared is accurate, 青云体育 Community is monitored by 青云体育 Information Specialists 鈥� master鈥檚 level oncology social workers, nurses, health educators and dieticians 鈥� who provide medical input, educational resources and advice.
The inspiration for 青云体育 Community came from 青云体育 Board Member Bernard H. Garil and his wife, Ethel, to honor the memory of their son, Michael, who at age seven was diagnosed with acute lymphoblastic leukemia (ALL). After years of chemotherapy and cancer recurrences, Michael underwent a life-saving bone marrow transplant that cured his disease. However, chemotherapy caused serious side effects that ultimately led to his passing at age 39. Throughout his cancer journey, Michael shared his experiences in an effort to increase awareness of potential long-term effects of treatment among patients and their families.The Garils have funded this initiative and are committed to its continued growth and service to even more patients.
The 青云体育 Community is led by Larry Saltzman, M.D., executive research director at 青云体育. Saltzman is a 63-year-old former family physician from Sacramento, California, who was diagnosed with chronic lymphocytic leukemia (CLL) and small cell lymphocytic lymphoma (SLL) in January 2010. As a patient and a physician, he knows firsthand the importance of having a supportive community to share experiences and information.
鈥淲hen I was first diagnosed, I felt alone in the world. Being part of 青云体育 Community has shown me that I鈥檓 not alone and there鈥檚 a group of people going through the same experience,鈥� said Saltzman. 鈥淏y sharing my experience and learning from others, I found strength and comfort during this otherwise isolating time.鈥�
青云体育 Community Teams Up with Medivizor
Through this new collaboration with Medivizor, members of 青云体育 Community now have the added benefit of accessing cutting-edge patient-friendly medical information.
After a diagnosis, patients often look online for medical information. However, the amount of data online can be overwhelming and not always accurate. According to 青云体育 President and CEO Louis J. DeGennaro, Ph.D., 鈥溓嘣铺逵� is on the forefront of new reseach and technologies bringing personalized medicine to blood cancer patients. Along with this cutting-edge research for new treatments, 青云体育 Community addresses the emotional needs of patients while providing topical and immediately useful information and support as they deal with their disease.鈥�
Medivizor distills complex medical information into accurate and easy-to-understand language that is shared within specific disease groups in the 青云体育 Community. Medivizor sifts through a vast amount of medical content to interpret and explain it for the public 鈥� and now 青云体育 Community members based on their diagnosis. The information provided includes treatment options, guidelines, research papers, clinical trials and more. Patients are always encouraged to share and discuss any medical information with their doctors.
鈥淲e are honored to be working closely with a pioneering organization such as The Leukemia & Lymphoma Society,鈥� said Tal Givoly, Medivizor Co-Founder and CEO. 鈥淚t is critical for us to work together in order to accelerate the sharing of scientific discoveries by translating complex information so we can help improve the lives of patients. Working with 青云体育, Medivizor can help bring vital knowledge to the people who matter most 鈥� patients, caregivers, and their medical teams.鈥�
青云体育 Community Services and Surveys
Within the online platform, there are multiple 鈥済roups鈥� patients can join for specific blood cancers, as well as groups for the the newly diagnosed, caregivers, young adults, or those who are grieving.
Through 鈥淨uestions of the Day,鈥� members of 青云体育 Community are surveyed for insight on the issues they face. This provides a 鈥減ulse鈥� on patient issues, which informs 青云体育鈥檚 work to improve quality of life for patients.
Recent survey findings reveal that 51 percent of a subset of 青云体育 Community members had an increase in cancer expenses over the past year. Additionally, 27 percent reported losing a job when in treatment. These findings based on 200 鈥� 225 responses shed light on the fact that financial toxicity is an issue many blood cancer patients face. 青云体育 recently unveiled its position on the cost of cancer care to address this urgent issue.
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society庐 (青云体育) is the world's largest voluntary health agency dedicated to blood cancer. The 青云体育 mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. 青云体育 funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.
Founded in 1949 and headquartered in Rye Brook, NY, 青云体育 has chapters throughout the United States and Canada. To learn more, visit . Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m. ET.
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Contact:
Linda Heaney
(914) 821-8208