NORD Webinar: Rare Cancer Research, Diagnosis, and Treatment

On September 30, 2021, the National Organization for Rare Disorders (NORD) hosted an educational webinar titled “Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment, and Research.” The webinar focused on the unique challenges that both rare cancer physicians and rare cancer patients face, as well as possible pathways to improving the situation. Speakers for this program included:

  1. Margarita Raygada, PhD., Research Geneticist and Oncology Genetic Counselor, National Cancer Institute, National Institutes of Health
  2. Simron Singh, MD, MPH, FRCPC, Medical Oncologist, Odette Cancer Center, Sunnybrook Health Sciences Center
  3. Robert Taylor, Patient Advocate, Life Raft Group and SWOG Cancer Research Network

Rare cancers tend to have poorer overall outcomes than more well-known cancers, often due to lack of awareness. Impacts include delays in both diagnosis and treatment, which can make the difference between death and survival. Dr. Singh emphasized that only a patient-centered approach will be able to close the gap.

He says that it’s really important for physicians to develop an educational network so that they can share knowledge and experiences with one another that can help doctors prepare for encounters with rare cancers. A critical component of successful treatment of rare cancers is access to specialists and specialist centers. These centers should be proactive in networking with other cancer treatment facilities so that patients don’t have to travel halfway across the country to get effective treatment. Specialist centers should also partner with patient support groups.

Dr. Raygada points out that while most rare cancers appear sporadically, there are some that can appear due to a genetic cause, such as certain disorders or syndromes that increase the risk of cancer. Others may have a genetic component as well.

It’s important to distinguish between patients whose disease has a genetic basis versus a sporadic one. Genomic medicines and personalized medicine give patients with these diseases greater opportunities in terms of treatment and in clinical trial participation. Patients also need to be informed on how critical genomic testing can be to determine the best treatment.

Rare cancer survivor Rob Taylor says that patients have to be ready to self-advocate. Rob joined the Life Raft Group, which helped him get critical input and care. Typical oncologists are often not informed about rare cancers. It’s important to make the effort to seek out a specialist; unfortunately, this is often entirely up to the initiative of the patient.

 Life Raft helped Rob by conducting critical research on his diagnosis. By meeting others, Rob was inspired and motivated to pursue better options, such as getting a specialist. Rob’s original cancer doctors basically ‘gave up’ on treating him. He was able to get mutational testing that was critical for identifying an effective therapy for him. Rob carried a mutation similar to NF1, and by using a treatment for it, his disease went into remission.

Rob says that doctors should be a part of making efforts to get in touch with patients in rural areas, who have less treatment access. Telemedicine could play a vital role in this as well. There needs to be an effective way for doctors to get access to critical information. 

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