- LLS 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) – LLS Community, a free online network providing support and education to blood cancer patients and their caregivers, launched by The Leukemia & Lymphoma Society (LLS) in 2016, has proved to be a valuable resource for patients and caregivers, growing to nearly 5,000 users in its inaugural year. Today LLS announced a new service for LLS Community (https://communityview.lls.org) in collaboration with the Israeli technology start-up Medivizor (medivizor.com). 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.
LLS Community Grows to Serve 5,000 Patients in First Year
LLS learned from speaking with patients that they want to connect with and learn from other patients with a similar diagnosis. The solution was LLS Community (https://communityview.lls.org) launched in February 2016. Currently nearly 5,000 users go online to share advice, experiences and opinions. To ensure the information shared is accurate, LLS Community is monitored by LLS Information Specialists – master’s level oncology social workers, nurses, health educators and dieticians – who provide medical input, educational resources and advice.
The inspiration for LLS Community came from LLS 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 LLS Community is led by Larry Saltzman, M.D., executive research director at LLS. 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.
“When I was first diagnosed, I felt alone in the world. Being part of LLS Community has shown me that I’m not alone and there’s a group of people going through the same experience,” said Saltzman. “By sharing my experience and learning from others, I found strength and comfort during this otherwise isolating time.”
LLS Community Teams Up with Medivizor
Through this new collaboration with Medivizor, members of LLS 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 LLS President and CEO Louis J. DeGennaro, Ph.D., “LLS 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, LLS Community addresses the emotional needs of patients while providing topical and immediately useful information and support as they deal with their disease.”
Medivizor distills complex medical information into accurate and easy-to-understand language that is shared within specific disease groups in the LLS Community. Medivizor sifts through a vast amount of medical content to interpret and explain it for the public – and now LLS 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.
“We are honored to be working closely with a pioneering organization such as The Leukemia & Lymphoma Society,” said Tal Givoly, Medivizor Co-Founder and CEO. “It 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 LLS, Medivizor can help bring vital knowledge to the people who matter most – patients, caregivers, and their medical teams.”
LLS Community Services and Surveys
Within the online platform, there are multiple “groups” 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 “Questions of the Day,” members of LLS Community are surveyed for insight on the issues they face. This provides a “pulse” on patient issues, which informs LLS’s work to improve quality of life for patients.
Recent survey findings reveal that 51 percent of a subset of LLS 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 – 225 responses shed light on the fact that financial toxicity is an issue many blood cancer patients face. LLS recently unveiled its position on the cost of cancer care to address this urgent issue.
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society® (LLS) is the world's largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS 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, LLS has chapters throughout the United States and Canada. To learn more, visit www.LLS.org. Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m. ET.