Coming together to help each other thrive is what the rare disease community does best. As the novel coronavirus and COVID-19 continue to spread around the world, you will have questions and need information on a variety of topics. The aggregated list of resources below comes from around our global community and has been built to make finding the information you need as easy as possible.

You can help show support and raise awareness for the rare disease community at this time by posting on social media with our downloadable sign and tagging @GlobalGenes. 

This is by no means a complete list. We hope that as you learn of new resources, you will send them to us at [email protected] so that we can share them with the wider community. And for additional education, don’t forget to check out our Resource Hub and RareUniversity

Here, you can find information on:

At Home Teaching Resources

Educational teaching materials to use when homeschooling your kids. Take virtual field trips, history lessons, and discover online tools to make the experience easy and informative.

Coverage and Benefits

Evolving medical coverage and drug administration updates offered to those needing clinical care.

Coronavirus (COVID-19) Education and Information

Educational resources to help broaden understanding of the virus, information on preventative measures, support groups, and its effects on vulnerable groups.

Diagnosis, Treatments and Vaccines

Updates about evolving treatments and expert webinars with medical and clinical trial guidance.

Exercise

Free tips and at-home workout plans to keep you active and moving while quarantined.

Entertainment

Videos, activities, what to listen to, and what do to occupy your time and keep you entertained during quarantine.

Foundation Resources

If you’re struggling to uphold your advocacy efforts virtually, here’s advice for maintaining communications with your community and nonprofit operations.

Financial Assistance

Financial support resources provided to groups in need who are facing unexpected financial stress as a result of the Coronavirus outbreak.

Government Updates

Official COVID-19 updates, information sorted by area and location-specific resources.

Mental Health

Sleep, meditation, and anxiety management tips and resources to help with mental health efforts during this uncertain time.

Policy and Advocacy

See how rare disease communities are being affected by COVID-19, what new policies are being implemented to fight it, and what advocacy groups are doing to help.

Support Services

How you can support and be supported by communities tailored to specific rare disease groups. Trainings and webinars on COVID-19 management and advice for vulnerable groups.

Talking to Kids

What you need to know when talking to children about coronavirus.

Virtual Networking

Social distance doesn’t have to mean social isolation. Chat and virtual meetup opportunities offered to those needing support, conversation, or advice from communities facing similar challenges.

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