We know the coronavirus pandemic is having a significant impact on our community. In this time of uncertainty, we want you all to know that we are here for you and that we will get through this pandemic together.
We understand the importance of treating mental health in addition to physical health, as many patients are now isolated and concerned about what’s to come. Here are some resources you can share with your community when they need additional support:
The rare disease community voice needs to be heard in government as COVID-19 challenges threaten to impact continuity of care for rare disease patients.Advocate
Here are some great tool kit for parents and caregivers to help guide them with conversations, activities, and resources during the COVID-19 pandemic.
250 Creative Ways to Keep Your Family Sane During COVID-19 Virus
14 Ways to Celebrate Your Child’s Birthday During COVID-19
Making Health and Nutrition a Priority During the Coronavirus Pandemic
Cooking Lessons, Videos, and Recipes for Families
Family Games (written for family reunions, but would be great for family nights)
Laughing at My Nightmare: COVID-19 Resource Relief
FamilesSCN2A Foundation Patient Assistance Grant Program
TailorMed: Financial Navigation Resources for COVID-19
PAN Foundation Treatment and Prevention Fund
Please submit suggestions for resources and guidelines to jenny@moebiussyndrome.org.