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 RareUniversity.
Here, you can find information on:
- At-Home Teaching Resources
- Coverage and Benefits
- COVID-19 Education and Information
- Diagnosis, Treatment, and Vaccines
- Exercise
- Entertainment
- Foundation Resources
- Financial Assistance
- Government Updates
- Mental Health
- Policy and Advocacy
- Support Services
- Talking to Kids
- Virtual Networking
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.
- District Administration: Free K-12 Resources
- We Are Teachers: 130+ Amazing Online Learning Resources
- Amazon Web Services: AWS Tools
- Freedom Homeschooling: Virtual Field Trips
- Mrs. Fahrney: Virtual Field Trips
- LearnOurHistory.com: Animated U.S. History Lessons
- Safety.com: How to Stay Safe as a Student During COVID-19
- Sitejabber: The Parent Guide to Kids’ Online Educational Resources
Coverage and Benefits
Evolving medical coverage and drug administration updates offered to those needing clinical care.
- Centers for Medicare & Medicaid Services: Coverage & Benefits Related to COVID-19 Medicaid and CHP
- U.S. Food & Drug Administration: Drug Shortages Database
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.
- Global Genes: COVID-19: Clinical Research Impacts on the Rare Disease Community
- Día de la Mujer Latina: Dispelling the Myths and Rumors of the New Coronavirus Disease (Webinar)
- Día de la Mujer Latina (DML): Coronavirus COVID 19 for Community Health Workers and Promotores- “5 Steps Community Health Workers and Promotores Can Take Right Now.”
- Día de la Mujer Latina: Disipando los Mitos y Rumores del Nuevo Coronavirus (Webinario)
- GRIN2B Foundation: Flip Book Social Story
- SCN2A Australia: Podcast on COVID and Epilepsy
- Coronavirus Support Network: FAQ (English)
- Coronavirus Support Network: FAQ (Spanish)
- Coronavirus Support Network: FAQ (Portuguese)
- Healthcoms.org: Covid Communication Network
- National Health Council: COVID-9 Preparedness for people with chronic disease (Webinar)
- Association of Community Cancer Centers: COVID-19 Resource Center
- American Society of Clinical Oncology: Coronavirus Resources
- American Academy of Neurology: COVID-19 Neurology Resource
- American Thoracic Society: Public Health Information Sheet
- American Thoracic Society: COVID-19 FAQ
- American Society of Clinical Oncology: ASCO Coronavirus Resources
- Drug Information Association: COVID-19 Webinar- Experts from China Speak on Conducting Clinical Trials
- ASTCT: COVID-19 Resources for Transplant Patients
- India WhatsApp Chatbot: MyGov Corona Helpdesk
- Johns Hopkins: Coronavirus COVID-19 Global Cases
- National Institute for Children’s Health Quality: COVID-19 Information for Children’s Health Advocates
- STAT News: What People with Chronic Illness Can Teach Us During COVID-19
- Authority Dental: Supplementary Dental Health and Oral Hygiene Recommendations During COVID-19 Pandemic
- Jeffrey VanWingen, MD: PSA Safe Grocery Shopping in COVID-19 Pandemic
- SBS Radio: Coronavirus Information in your Language
- Partners in Health: COVID-19 Clinical Response
- Instituto Vidas Raras: ORIENTAÇÕES GERAIS DE CUIDADOS COM AS PESSOAS COM DOENÇAS RARAS E SEUS CUIDADORES NA PANDEMIA DE CORONA VÍRUS
- Instituto Vidas Raras: General Guidelines on Care for Rare Disease Patients and their Caregivers in the Coronavirus Pandemic
Diagnosis, Treatments and Vaccines
Updates about evolving treatments and expert webinars with medical and clinical trial guidance.
- Milken Institute, FasterCures: COVID-19 Treatment and Vaccine
- U.S. Food & Drug Administration: Clinical Trial Guidance
- Mindray: COVID-19 Clinical Diagnostics Webinar Episode 1
- Mindray: COVID-19 Clinical Diagnostics Webinar Episode 2
- Mindray: COVID-19 Clinical Diagnostics Webinar Episode 3
- Mindray: COVID-19 Experts Dialogues
- Biopharma Dive: A guide to clinical trials disrupted by the coronavirus pandemic
- Mujer Latina: COVID-19 Telehealth Training
Exercise
Free tips and at-home workout plans to keep you active and moving while quarantined.
- Orangetheory: Orangetheory At Home
- Gold’s Gym: Stronger Anywhere
- Peloton: Free App
- Planet Fitness: Home Work-Ins
- Crunch: Crunch Live
- 305 Fitness: Group Classes
- Corepower Yoga: Keep Up Your Practice
- American Heart Association: Choose Your Own Workout
- Ehlers-Danlos Society: Free Home Movement Program
Entertainment
Videos, activities, what to listen to, and what do to occupy your time and keep you entertained during quarantine.
- Two Disabled Dudes: Podcast
- Global Genes: RARECast (Podcast)
- Rare in Common: Podcast
- Ehlers-Danlos Society: Ideas for When Housebound
- John Krasinski: Some Good News
- Instagram Live: John Legend
- Instagram Live: Luke Combs
- Instagram Live: Coldplay, Chris Martin
- Instagram Live: Gentle Hours with John Mayer
- Global Genes: RARE Daily
- Upgraded Points: The 100+ Best Virtual Tours and Field Trips for Kids and Students
Foundation Resources
If you’re struggling to uphold your advocacy efforts virtually, here’s advice for maintaining communications with your community and nonprofit operations.
- National Digital Roundtable: Advocacy When In-Person is Impossible (Video)
- National Council of Non-Profits: Federal COVID-19 Legislation: What do they man for nonprofits? Webinar
- Bizbash.com: 6 Tips for Pivoting an In-Person Event into a Virtual Experience
- Chan Zuckerberg Initiative: Effective Delegation for Coordinating Remote Teamwork
- Chan Zuckerberg Initiative: Asana Basics
- Chan Zuckerberg Initiative: Digital Fundraising: Diversifying Online Fundraising During COVID-19
- Chan Zuckerberg Initiative: Managing Up and Sideways in a Changing Environment
- Centers for Disease Control & Prevention: Communication Resources
- Patient Advocate Foundation: COVID-19 Operational Response Plan
- Nielsen Training & Consulting, LLC: COVID-19 Resources for Nonprofit Leaders
- Fibro Flutters: Chronic Illness Voice Daily
- LAPA: International COVID-19 Funding Sources
- Learning Revolution: Host a Virtual Conference- 10 Tips for Success
- SCORR Marketing: Coronavirus Conference/Trade Show Status
- COVID-19 Health Comms
- Global Genes: Tips and Strategies for Shifting to Online Advocacy Events-and Beyond!
- Chan Zuckerberg Initiative: How to Actually Re-Prioritize Your Work When the Environment Changes
- Chan Zuckerberg Initiative: Communicating: Messaging This Moment
- Chan Zuckerberg Initiative: How to Navigate Feedback and Interpersonal Conflict in Remote Environments
- Chan Zuckerberg Initiative: Online Facilitation 101
- Chan Zuckerberg Initiative: Leading in Times of Extraordinary Change
- Chan Zuckerberg Initiative: Management Techniques
- Chan Zuckerberg Initiative: Engaging Your Board and Leaders in Response to Crisis
- Chan Zuckerberg Initiative: Responding to COVID-19 Non Profit Management Strategies
- Chan Zuckerberg Initiative:Crash Course in Remote Management
- Mesothelioma.net: COVID-19 Impact on Mesothelioma Patients
Financial Assistance
Financial support resources provided to groups in need who are facing unexpected financial stress as a result of the Coronavirus outbreak.
- Laughing at My Nightmare: COVID-19 Resource Relief
- Arkansas Community Foundation: Arkansas COVID Relief Fund
- The FamilieSCN2A Foundation: COVID-19 Financial Relief Grant
- City of Boston: Boston Resiliency Fund
- TailorMed: Financial Navigation Resources for COVID-19
- PAN Foundation: COVID-19 Treatment and Prevention Fund
- Susan G. Komen: Komen COVID-19 Action Fund
- I Stay Home For Rare
- Myositis Support and Understanding: Financial Assistance Program
Government Updates
Official COVID-19 updates, information sorted by area and location-specific resources.
- World Health Organization: Rolling Updates on COVID-19
- World Health Organization: COVID-19 Online Courses
- Washington Post: Coronavirus Stimulus Check Calculator
- Centers for Disease Control & Prevention: Guidelines for people at High Risk
- Centers for Medicare and Medicaid Services: Current Emergencies
- Centers for Medicare and Medicaid Services: Coronavirus (COVID-19) Partner Toolkit
- Cambridge Rare Disease: Current UK NHS & Government Information & Guidance
- City of Little Rock: Experiencing symptoms related to COVID-19?
- City of Little Rock: ¿Tiene síntomas relacionados con COVID-19? (Spanish)
- City of Boston: Food Sites for Children & Youth
- Food & Drug Administration: COVID-19 What’s New and Fast Facts
- National Institutes of Health: COVID-19 Updates
- World Health Organization: Coronavirus Information
- Centers for Disease Control & Prevention: Coronavirus Information Center
- U.S. Government: State Health Department Directory
- Canada Public Health Services: Canada’s COVID-19 Virtual Assistant
- Pan American Health Organization: Coronavirus Disease Updates
- Australian Government Department of Health: Coronavirus Health Alert
- European Centre for Disease Prevention and Control: National information resources for the public on COVID-19
- New Zealand Government: Unite Against COVID-19
- New Zealand Ministry of Health: COVID-19 Information for Families in need of Health and Disability Support Services
- National Institute for Health and Care Excellence (NICE): COVID-19 Rapid Guideline
Mental Health
Sleep, meditation, and anxiety management tips and resources to help with mental health efforts during this uncertain time.
- Centers for Disease Control & Prevention: Managing Stress and Anxiety During COVID-19
- Happy: Online Mental Health Support
- SleepHub: Sleep Talk- Talking All Things Sleep
- NAMI: COVID-19 Guide, Information and Resources
- Resounding Joy: Musical Therapy Classes for Medically Fragile Children Monday-Friday 10AM-10:45AM PT.
- Osteogenesis Imperfecta Foundation: Mental Health and Self Care During COVID-19
- Online Counseling Programs: Managing Mental Health During the Coronavirus Pandemic
- Chan Zuckerberg Initiative: Self Care: Practices for Resilience in the Moment
- Chan Zuckerberg Initiative: Building Resilience in Times of Crisis and Transformation
- Everyday Health: Boxed In: COVID-19 and Your Mental Health
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.
- EveryLife Foundation for Rare Diseases: COVID-19 Resources
- The Myositis Association (TMA) & American Autoimmune Related Diseases Association (AARDA): Isolation Protocols Environmental Challenges and Autoimmune Diseases
- American Autoimmune Related Diseases Association (AARDA): COVID-19 Expert Dialogues
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.
- Robert Wood Johnson Foundation Culture of Health Leaders: Coronavirus Support Network
- Multiple Myeloma Research Foundation: COVID-19 & MMRF
- Global Healthy Living Foundation: COVID-19 Support Program for Chronic Disease Patients and Their Families
- Cancer Support Community: What Cancer Patients, Survivors, and Caregivers Need to Know About the Coronavirus
- Australian Government Department of Health: COVID-19 Infection Control Training
- American Academy of Family Physicians: COVID-19 Resource Hub
- American College of Physicians: COVID-19 Webinars and Guidance for Physicians and Patients
- CureDuchenne: Coronavirus Health Update Guide
- Prader-Willi Syndrome Australia: PWS Australia Information Update on COVID-19
- Parent Project Muscular Dystrophy (PPMD): COVID-19 & Duchenne- What you need to know.
- Action Duchenne: COVID-19 Advice for the Duchenne’s Community
- Apple & CDC: COVID-19 Screening Tool
- International Fibrodysplasia Ossificans Progressiva Association: Clinical Council on FOP Issues COVID-19 Precautions for FOP Families
- National Disability Insurance Scheme: COVID-19 Updates
- PHA – Pulmonary Hypertension Association: COVID 19 and Pulmonary Hypertension
- The Teeth Blog: Oral Hygiene Instructions During Coronavirus
- MyMove: Can Coronavirus Live on Mail? How to disinfect your mail from COVID-19, step by step
Talking to Kids
What you need to know when talking to children about coronavirus.
- Kids Health, Nemours: How to Talk to Your Kids About COVID-9
- KinderCare: Talking to Children About Coronavirus
- HealthyChildren.org: Tips for Parents About COVID-19
- Government of South Australia: COVID Children’s Book
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.
- Ehlers-Danios Society: Virtual Chat Rooms
- Twitter QA: #spooniechat
- Our Odyssey: Online Meetups
- The Mighty: Come Hang with the Mighty Events
- The FamilSCN2A Foundation: Community Chats
- LinkedIn: Nonprofits Stepping Up to the Virtual World
- Digital Health CRC: Telehealth Webinar
- Terrapin: World Orphan Drug Congress USA Webinars
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