COVID-19 and the Rare Disease Community

The novel form of coronavirus, labeled as COVID-19 has been declared a pandemic and many people living with rare diseases have questions and concerns.

Here are a few resources you may want to check out:

  • The National Organization for Rare Disorders (NORD) has provided guidance on COVID-19 for people living with rare diseases and recommends following Centers for Disease Control and Prevention (CDC) recommendations for prevention. For more information on how to prepare your home and family, check out the Prepare Your Home resource on the CDC website.
    • Check out this webinar from NORD featuring Dr. Marshall Summar, Chief, Division of Genetics and Metabolism, and Director of the Rare Disease Institute at Children’s National Hospital, Dr. Bernhard Wiederman, Infectious Disease Specialist at Children’s National Hospital, and Dr. Albert Freedman, Counseling Psychologist and rare parent, for guidance on living with a rare disease and maintaining your physical and mental health in the time of COVID-19.
  • Global Genes’ In Rare Form writer and podcaster Daniel Levine shared his perspective on the global pandemic and encourages the rare disease community to reach out and share their concerns and challenges. You can also view Global Genes’ COVID-19 resource page.
  • National Health Council hosted a webinar on coronavirus (COVID-19) preparedness for people with chronic diseases.
  • CreakyJoints has shared advice from public health experts regarding patients who are immune-compromised.
  • For those concerned about their work situation, the Immune Deficiency Foundation has put together FAQs to addresses concerns around COVID-19, including employment rights under Americans with Disabilities Act, Unemployment and Family and Medical Leave Act.
  • The American Kidney Fund has created the AKF Coronavirus Emergency Fund, which provides $250 one-time grants to patients affected by the coronavirus. More information on AKF resources and the application can be found on their website.
  • To reduce stress and keep in touch with others in the rare disease community, Our Odyssey is hosting online meet ups to provide social and emotional support for young adults living with rare and chronic conditions. Register for a virtual meet-up here.

Stay Informed

New information and updates to recommendations are being made every day. View dozens of downloadable resources from the Centers for Disease Control and Prevention (CDC) and view research from the National Institutes of Health (NIH).

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