Even if they’re fully vaccinated, multiple myeloma patients still have an increased risk of COVID-19 infection compared with people without cancer, according to a study looking at data from more than 500,000 individuals in the U.S. Called breakthrough infections, these post-vaccination illnesses from SARS-CoV-2 — the virus that causes COVID-19 — also were associated with…
About Cancer
Cancer, also called malignancy, is an abnormal growth of cells with the potential to invade or spread to surrounding tissues and structures found within the body. There are more than 100 types of cancer. A few examples include breast cancer, skin cancer, lung cancer, colon cancer, prostate cancer, and lymphoma. According to the American Cancer Society, 4 out of 10 people will be diagnosed with some form of cancer in their lifetime. Cancer prevalence has given rise to multiple medical specialties focused on symptom management and disease management. Current treatment options depending on the form of cancer include chemotherapy, radiation, blood or bone marrow transfusions, and/or surgery. Lifetime prognosis of cancer mortality is dependent on the type of cancer and is heavily conditional to early detection.
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RaDaR Serves as Starting Point for Creating Rare Disease Registry
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how many registries exist in the U.S.…
Sarclisa Extends Survival in RRMM, Long-term Phase 3 Trial Data Shows
The therapy Sarclisa (isatuximab) extended survival by nearly seven months in relapsed/refractory multiple myeloma patients also given Pomalyst (pomalidomide) and dexamethasone as standard treatment, according to updated three-year data from the ICARIA-MM Phase 3 trial. The data, “Isatuximab plus pomalidomide and low-dose dexamethasone versus pomalidomide and low-dose dexamethasone in patients with relapsed and refractory multiple myeloma…
#RAREis Representation Program Promotes Equity, Diversity
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on several factors, including the social determinants of…
FDA Places HPN217, Immunotherapy for Advanced Disease, on Fast Track
The U.S. Food and Drug Administration (FDA) has given fast track designation to Harpoon Therapeutics’ HPN217 as a potential immunotherapy for people with relapsed, refractory multiple myeloma (RRMM) who have tried at least four prior therapies. Fast track status is given to therapies that show potential in addressing serious conditions for which available treatments fall short. It is…
Rare Disease Day Panel Opens Window to Patient Experience
BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A Window Into RARE,” was hosted by Liza Bernstein,…
Cilta-cel – now Carvykti – Approved by FDA for Heavily-treated Myeloma
The U.S. Food and Drug Administration (FDA) has approved the CAR T-cell therapy Carvykti (ciltacabtagene autoleucel) — formerly known as cilta-cel — for certain adults with relapsed or refractory multiple myeloma. In particular, the approval makes Carvykti available for people who have received at least four prior lines of therapy, including a proteasome inhibitor (PI), an immunomodulatory agent (IMiD),…
Surge in Telehealth Brings Access, Convenience to Rare Disease Patients
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that burden, estimated at nearly $1 trillion,…
IMF Opening ‘Action’ Campaign to Mark Myeloma Awareness Month
The International Myeloma Foundation (IMF) is opening its annual Myeloma Action Month (MAM) campaign with a variety of events and undertakings to raise disease awareness across the community and the public-at-large. “Action” is theme of this year’s monthlong event, held each March. “The focus for this year’s Myeloma Action Month will be on actions that individuals…
Q&A With RARE-X Disease Data Platform Founder, Nicole Boice
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of RARE-X, did with Global Genes. That…
More Studies Confirm Hefty Economic Burden of Rare Diseases
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion. Annie Kennedy is the chief of policy, advocacy, and patient engagement at the EveryLife Foundation for Rare Diseases. (Photo courtesy of the EveryLife Foundation) In…
FDA Designates CT103A, CAR T-cell Therapy, an Orphan Drug
The U.S. Food and Drug Administration (FDA) has granted orphan drug status to CT103A, an experimental CAR T-cell therapy that IASO Biotherapeutics and Innovent Biologics are developing to treat relapsed or refractory multiple myeloma. Orphan drug designation is given to therapies with a potential to substantially improve care for rare diseases, defined as conditions affecting…