As part of its expanded outreach to medical professionals, NORD recently partnered with Frontline Medical Communications (FMC), a division of Medscape, on Rare Diseases Report: Rheumatology and Rare Diseases Report: Cancers, both published in late 2020.
The two special issues are the latest in a series of publications on which NORD and FMC collaborate to promote awareness of rare diseases, current research and state-of-the-art treatments among physicians and other medical professionals.
“We value this opportunity to communicate directly to the professionals who play such an important role in the lives of the patients and families whom we represent,” Rebecca Aune, Director of Education Programs at NORD, noted in her introduction to Rare Diseases Report: Rheumatology. “To be able to convert today’s rapidly expanding knowledge to earlier diagnosis and state-of-the-art care for patients requires constant communication with those on the ‘front lines’ – the medical professionals caring for patients affected by rare medical conditions.”
In their introduction to Rare Diseases Report: Cancers, Jim Palma, Executive Director of Rare Cancer Foundation, and John Hopper, President of the Fibrolamellar Cancer Foundation, provide an update on the activities of the NORD Rare Cancer Coalition®, which they co-chair, and describe how it promotes awareness of rare cancers and supports organizations serving patients and their families.
“Our goal is for each member of the Coalition to provide the best possible service to its particular rare cancer community,” Palma and Hopper write.
Both publications feature articles about recent NORD research to document the impact of COVID-19 on the rare disease community. For these articles, the editors interviewed rare disease medical experts in oncology and rheumatology on how research and patient care in their disciplines have been affected by the pandemic.
In Rare Diseases Report: Rheumatology, Sivia Lapidus, MD, of the Joseph M. Sanzari Children’s Hospital and Hackensack Meridian School of Medicine in New Jersey, and Fatma Dedeoglu MD, of Boston Children’s Hospital and Harvard Medical School, talk about the effect of COVID-19 on patient care, including related topics such as telemedicine.
Similarly, in Rare Diseases Report: Cancers, Allison F. O’Neill, MD, of Dana-Farber Cancer Institute and Harvard Medical School, and Razelle Kurzrock, MD, of University of California at San Diego and Moores Cancer Center, discuss the impact on clinical trials and the challenges to ongoing clinical care for those affected by rare malignancies.
“These publications and a similar one on rare neurological diseases to be published around Rare Disease Day are part of an expanding array of educational resources that NORD provides for medical professionals,” Aune said. “These include CME programs, conferences, webinars and a video library, among others. The ultimate goal is to help patients get the earliest possible diagnosis and the best possible medical care.”
The two publications have been broadly distributed to medical professionals in rheumatology and oncology. They are also available for download on the NORD website.
