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.
The following resources might be helpful to the Moebius community.
HEALTH AND SAFETY
- The National Health Council, hosted a webinar to address the concerns COVID-19 is causing globally. The speakers discussed the ways patient groups can assist their members and other constituents in reducing the impact of COVID-19, such as how patients with chronic diseases can avoid the illness, what to do if they feel sick and how patient groups can prepare to field inquiries from their members. Access the webinar recording
- Global Genes has created COVID-19 rare disease resource list to help everyone around the world who is in quarantine or practicing social distancing. This includes government resources, entertainment, opportunities for virtual social interaction and more.
- Centers for Disease Control
- World Heath Organization
- Canada Public Health Services
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:
- Mental Health America: dedicated to those living with mental illness and to promoting overall mental health
- Center for Chronic Illness: provides educational and emotional support for people with rare/chronic illnesses via web-based support groups
- Mental Health and Coping During Covid-19
- Happy 24/7 offers support and encouragement from peer support counseling (new users can try it free of charge)
- Preventing Compassion Fatigue: Caring for Ourselves While Caring for Others
- Mental Health Resources from Social Work License Map
- Online Therapy Directory
- Returning to “Normal” Mental Health, Post Covid-19
- The Home For the Moebius Community Facebook Group https://www.facebook.com/groups/1747904085515409/
- Moebius Syndrome Foundation Page https://www.facebook.com/Moebiussyndrome
- Moebius Moms & Dads Facebook Group https://www.facebook.com/groups/240599469393672/
- Many Faces of Moebius Facebook Page https://www.facebook.com/Manyfacesofmoebiussyndrome/
- One way we can overcome fear of the unknown and create a sense of belonging is by sharing our stories with one another. Submit your story using this link for a chance to be published on the Global Genes website: https://globalgenes.org/share-your-story/
- Our Odyssey is hosting online meet ups to help with social and emotional support for young adults living with rare and/or chronic conditions during this time of increased isolation. This organization was founded by young adults living with rare and chronic conditions. Details are below; please share with your community:
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
- NORD Rare Action Network https://rareaction.org/get-involved/join-rare-action/
- Every Life Foundation https://everylifefoundation.org/covid19/
RESOURCES FOR PARENTS AND CAREGIVERS
Here are some great tool kit for parents and caregivers to help guide them with conversations, activities, and resources during the COVID-19 pandemic.
TailorMed: Financial Navigation Resources for COVID-19
MOEBIUS SYNDROME FOUNDATION BOARD OF DIRECTORS
Please submit suggestions for resources and guidelines to firstname.lastname@example.org.