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NORD’s Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community

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As information on the coronavirus, which causes COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC). The National Organization for Rare Disorders (NORD) continues to monitor the situation with the rare community in mind. The severity of illness or how many people will fall ill from COVID-19 is unknown at this time, however there is a particular concern for those among our community who are immunocompromised. We encourage you to follow the advice of your medical team regarding your personal health and safety and stay informed by following updates from the CDC and your local health department. Currently the risk for getting COVID-19 remains low in the United States, however, we recognize that may change quickly.


At this time the CDC recommends the following to prevent the spread of COVID-19:

  • Avoid close contact with people who are sick.
  • Avoid touching your eyes, nose, and mouth.
  • Stay home when you are sick.
  • Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
  • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
  • CDC does not recommend that people who are well wear a face mask for protection. Face masks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease. The use of face masks is crucial for health workers and people who are taking care of someone in close settings.
  • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.


COVID-19 is caused by a novel virus, and there is still much we have yet to learn. One fact that is known, however, is an infected person can be a carrier, capable of spreading the virus to others for several days before they begin to show symptoms or know they are sick. Therefore, the best prevention strategy is to implement these hygiene practices now, rather than wait for cases to be known where you live.

In addition to doing what can be done to prevent the spread of COVID-19, we also recommend rare disease patients prepare should you need to self-quarantine. Speak with your doctors in advance to see how you can reach them if this situation were to arise. Do you have enough medicine or will your local pharmacy deliver? Your health provider may be able to advise you. Make a list of family, friends and/or neighbors who you might call if you need assistance. Make sure you have enough food, water and other basic supplies on hand should you need to remain at home for a period of time. Finally, should you or a loved one need to travel, review CDC’s travel notices to ensure you aren’t putting yourself or a family member at risk.


Get the latest updates from trusted resources:


We will continue to follow guidance from the CDC and other agencies, and communicate with the rare community directly as the situation develops.


Peter L. Saltonstall

President and CEO, NORD