The Latest Rare Disease Webinars Focused on COVID-19

  • May 28, 2020

The Latest Rare Disease Webinars Focused on COVID-19

CheckRare is working  to keep our audience of health care professionals up-to-date on the latest guidances and developments as it relates to how to better manage rare disease patients, many that require special medications and special care, during the current COVID-19 pandemic. Below are some of the webinars we found that may be useful for your practice. If you know if any articles or webinars that would be of interest to our audience, please forward to info@checkrare.com

Clinical Research and COVID-19

Global Genes hosted a video conference call with clinicians to educate patients on the how COVID-19 may impact clinical trials.To view the webinar, click here.

Recently, the U.S. Food and Drug Administration (FDA) published guidances for clinical trials, including those for rare conditions, during the COVID-19 pandemic.

To read more, click here.

 

Caregiving During COVID-19

The Everylife Foundation provides patients and patient groups with updates about COVID-19, including tips for sending letters to your representatives to ensure those with chronic conditions can still receive the care they need during this pandemic.

To view the webinar, click here.

The National Health Council provides patients and patient groups with information chronic condition and  about COVID-19. Their most recent webinar provides helpful tips for how caregivers of people with chronic conditions can be prepared for the coronavirus pandemic.

To view the webinar, click here.

 

 Immunocompromised Patients and COVID-19

Cystic Fibrosis Foundation hosted a webinar focused on how to manage patients with cystic fibrosis. To view the webinar, click here.

The American Autoimmune Related Diseases Association hosted a webinar focused on COVID-19 and Autoimmune Disease. To view the webinar, click here.

 

Neuromuscular Conditions and COVID-19

Parent Project MD focuses on Duchenne muscular dystrophy and has several webinars involving medical professionals explaining different aspects of caring for persons with neuromuscular disorders. To view the webinar, click here.

CureSMA focuses on spinal muscular dystrophy has a webinar explaining how SMA families can cope with managing a person with SMA. To view the webinar, click here.

 


 

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