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.
Our Chief Scientific Officer and members of the Scientific Advisory Board have put together a collection of common questions and answers related to the COVID-19 vaccine rollout, and specific areas of concern for the MPS/ML community. Please click through the FAQ images for more in-depth information.
Additional links
State & Territorial Health Department Websites – It is important to remember that the CDC makes recommendations for vaccine rollout, but each state determines its own plan. Please follow the link above to find out more info in your particular state.
COVID-19 Vaccine: Clinical Considerations from the CDC – Explore this informative slide deck from the CDC with clinical considerations for the Pfizer-BioNtech vaccine.
Physician Letter Template – Are you a parent or guardian of a high-risk individual with MPS or ML? Ask your doctor or healthcare provider to send a letter on your behalf requesting inclusion into top priority groups for vaccine distribution in your state. Download this Microsoft Word template to get started.
Please watch this video message from National MPS Society President & CEO Terri Klein and CSO Dr. Matthew Ellinwood. In addition to sharing happy holiday wishes, they have insight to consider for the rare disease community on the ongoing pandemic and what to expect with the upcoming phased rollout of vaccines.
Vaccine information by state
Please visit this CDC website to learn about COVID-19 vaccine information specific to your state.
The National Academies have released their reccommendations for the equitable distriution of COVID-19 vaccines, when available. Thanks to all in the MPS and ML community who contributed support and input to our petition and surveys during the process. Please click here to read more information on this framework.
Coronavirus General Information
Severe COVID-19 Complications and MPS and ML Patients
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
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.
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.
“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.