Handling Rare Diseases and COVID-19: National Organization for Rare Disorders Reminds You to Stay Strong


If you’re worried or anxious because of COVID-19, you’re not alone. If wondering about the intersection of rare diseases and COVID-19 only increases that anxiety, well, we’re with you there too.

But according to Cushing’s Disease News, the National Organization for Rare Diseases (NORD) has a message for this entire community: you’re stronger than you think, so hold onto that strength.Watch the full NORD webinar on rare diseases and COVID-19 here. 

Reviewing the Webinar

The National Organization for Rare Diseases (NORD) is a nonprofit that focuses on advocacy and education for patients and their families. In addition to providing videos, research, and clinical trial information to patients, NORD also offers membership for patient organizations, alongside research opportunities for clinicians.

Currently, COVID-19 is taking the world by storm. Each day, the numbers increase: 1,450,343 cases worldwide, 83,568 deaths, 308,617 recoveries. So it is no surprise that many citizens, especially those who are immunocompromised, are frightened about the virus.

But Marshall Summar, MD, the director of the Rare Disease Institute at Children’s National Hospital, says that patients with rare diseases are actually more prepared to handle this situation because they are used to being at risk.

In addition to Summar, speakers on the webinar included:

  • Bernhard Wiedermann, MD, an infectious disease expert
  • Albert Freedman, PhD, a psychologist who has a son with spinal muscular atrophy (SMA)

Rare Diseases and COVID-19: Mitigating the Risk

It is believed that patients with rare diseases are more at risk of severe symptoms if diagnosed with COVID-19. This is especially true for older patients, patients with cystic fibrosis, patients who have had organ (lung, kidney, liver) transplants, and patients on immunosuppressive therapies.

However, this presents a potential issue. How should patients handle their current medical treatments or needs? Should cancer patients receive chemotherapy? Should dialysis patients stop attending appointments?

Summar states that patients should continue receiving their regular therapies and taking care of their health. After all, patients may experience more adverse effects by not treating the disease or condition than from COVID-19.

However, if you are concerned about your care plan or how visiting the hospital might affect you, please reach out to your care team for a more personalized plan.

Helpful Hints

If you’re looking to prevent the intermingling of rare diseases and COVID-19, here are some suggestions:

  • Continue social distancing. That means stay at home if you do not need to go outside. Stay away from large groups. Self-quarantine if you feel sick or are exhibiting any symptoms of COVID-19.
  • If you are feeling anxious, consider telemedicine as an option. If your procedure or question can be answered remotely, don’t overwhelm office space.
  • Get updated treatment letters.
  • Avoid touching your face
  • Make sure that you have refills of any necessary medicines that you may need for your particular condition.
  • Prepare a kit with phones, electronics, chargers, and medications to bring to the hospital on the off chance you need to go.
  • Finally, don’t panic. This is easier said than done. Summar reminds those in the rare disease community that you have most likely dealt with situations like this before, so try and breathe and remember not to let fear win.

Don’t Neglect Your Mental Health

At Patient Worthy, we understand that this time can be extremely mentally taxing. If you are experiencing extreme anxiety, denial, depression, or other stressful mental states, please consider reaching out to your care team or a psychologist via telemedicine.

Additionally, there are other ways to help manage your emotions during this time. First off, focus on what is in your control. You can’t control COVID-19, but you can control how much you eat, sleep, and drink. Open your windows to let in sunlight and fresh air. Exercise when you can. Video chat with friends and family. Connect with online support groups for other patients. Read books or watch a new movie. Limit exposure to the news if the information gets you worked up. Finally, having a routine can help bring some normalcy to your day.

In other words, try to focus on the positives in this situation. Finally, Summar leaves you with a reminder to help you get through these trying times:

“We are experts at facing challenges and adversity. We are resourceful, resilient and adaptive.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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