COVID-19 and MPS/ML: Information and Support

We are dedicated to providing our members with the latest information and support around COVID-19. We are pleased to offer the following resources to our membership and will continue to update these regularly as the situation necessitates.

Coronavirus General Information

Severe COVID-19 Complications and MPS and ML Patients

Clinical Trial Updates During COVID-19

Infusion Considerations During COVID-19

General Resources

These resources are provided to offer an overview of the most current and up-to-date information on COVID-19 and explanations of coronavirus and the impact on cellular structure and the body.

Critical Airway/Intubation Cards

These templates provide a printable wallet-sized card to record intubation instructions for emergency use. If you or your child has had a recent surgery, you should be able to obtain this information through anesthesiology. Please select the appropriate card below and print on both sides.

MPS Critical Airway Card
ML Critical Airway Card

Emergency Medical Form

We encourage you to download and complete this packet. Print out at least two copies to keep available in the event of an emergency and dedicate time at least every 6 months to maintain and update information within.

Support Sessions

These sessions are conducted utilizing the Zoom platform and offer support and information to members within the US and internationally around specific topics.

Video Updates: Terri Klein, President/CEO, provides regular updates to disseminate the latest information regarding COVID-19 and the National MPS Society. You may view these on our social media portals, with archives hosted on our YouTube channel.

Kids’ Education Activities

“Beto & the Coronavirus”: Here is a fun and free activity sheet for your kids to complete with coloring, mazes, word search, and more. Download and discuss with your kids to help them understand some of the key aspects of the Covid-19 pandemic.

Other Resources

Living in the Light: “I Stay Home for Rare”: families can apply for grant assistance for up to $2,500 to help with recurring bills, medical equipment, childcare, etc. Visit I Stay Home for Rare to donate or apply.