The National ALS Registry Newsletter- 5th Edition May 2020
Sign Up for Our Newsletter
Want to learn more about the National ALS Registry? Sign up to stay up-to-date with the Registry
What did you do to help spread the word during awareness month?
Submit your stories or activities for the next newsletter! alsregistry@cdc.gov
COVID-19 and National ALS Biorepository Update and Survey Reminders
Due to COVID-19, the National ALS Biorepository has decided to take necessary precautions and temporarily stop in-home blood collections. However, you can continue to take the risk factor surveys. The surveys are voluntary, and by participating in the surveys, persons with ALS can provide researchers with information that may be used to improve our understanding of this disease.
If you would like to answer or submit any of these surveys, please log into your registry account here and click on the “Available Surveys” link.
Please remember to check for new surveys added since you last visited the Registry.
National ALS Registry Annual Meeting 2020 Update
The National ALS Registry has held its annual meeting since 2011. This meeting has been an important way for neurologists, researchers, advocacy groups, and especially patients and caregivers, to provide guidance and direction for the Registry’s initiatives.
Due to the current situation with COVID-19 nationally, as well as our commitment to protect the well-being and safety of our attendees, ATSDR has changed the format from an in-person meeting to a virtual event.
We have decided to consolidate the meeting to a single day: August 4th, 2020.
This is an invitation-only meeting; further details will be forthcoming.
May is National ALS Month
Check out our free social media resources:
ALS Registry Overview Fact Sheet Spanish
Don’t forget you can always order Registry materials:
We want to hear from you
Have any questions or feedback on our newsletter?
We invite you to reach out to us.
als@cdc.gov