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COVID-19 Resource List

The New England Regional Genetics Network (NERGN) has been continuing to update our list of telehealth resources for families. Much of this list was based on resources compiled by the National Coordinating Center (NCC) which helps to coordinate the work of the seven regional genetics collaboratives (including NERGN).

Critical Resources

Name: Medical Food Access Emergency Fact Sheet
Type of Resource: Directory Resource 
Developed By: Southeast Regional Genetics Network 
Intended Audience: Genetics Providers,Non-Genetics Providers,Regional Genetics Networks,Patients and/or Families, Public Health
Link to Resource: https://southeastgenetics.org/covid_fact_sheet.php

Name: Emergency Preparedness Toolkit for Genetics Providers and Patients
Type of Resource: Fact Sheet Resource
Developed By: National Coordinating Center for the Regional Genetics Networks (NCC)
Intended Audience: Genetics Providers Link to Resource: https://nccrcg.org/wp-content/uploads/Emergency-Preparedness-Resources-f...

Name: Are You Ready? Preparing for Emergencies: Tips for Families
Type of Resource: Fact Sheet,Checklist Resource
Developed By: Family Voices
Intended Audience: Patients and/or Families
Link to Resource: https://familyvoices.org/wp-content/uploads/2018/06/EmergencyDisasterPla...

Name: Home Education Resource for Families of Children with Special Needs (Links homebound families caring for children with special needs with volunteer educators)
Type of Resource: Form Resource
Developed By: Massachusetts Families Organizing for Change
Intended Audience: Patients and/or Families,Educators
Link to Resource: https://docs.google.com/forms/d/e/1FAIpQLSc4MGE1L2zTAdzsv8RDRfnMwT21-iT9...

Name: Supporting Families During COVID-19
Type of Resource: Website Resource
Developed By: Child Mind Institute
Intended Audience: Patients and/or Families
Link to Resource: https://childmind.org/coping-during-covid-19-resources-for-parents/

Name: Action Steps for Attendant Service Users in Response to COVID
Type of Resource: Website Resource
Developed By: Center for Disability Rights
Intended Audience: Patients and/or Families
Link to Resource: http://cdrnys.org/blog/programs-services/action-steps-for-attendant-serv...

Name: 14 Week Program to a Healthier You (home nutrition and exercise program for people with disabilities)
Type of Resource: Website Resource
Developed By: NCHPAD
Intended Audience: Patients and/or Families
Link to Resource: https://www.nchpad.org/14weeks/

Name: COVID-19 Information By and For People with Disabilities (in 11 languages)
Type of Resource: Website Resource
Developed By: Green Mountain Self Advocates
Intended Audience: Patients and/or Families
Link to Resource: https://selfadvocacyinfo.org/resource/plain-language-information-on-covi...

Teleheatlh for Families

Name: Telewhat?: An Introduction to Telegenetics
Type of Resource: Infographic Resource
Developed By: National Genetics Education and Family Support Center (NGEFSC)
Intended Audience: Patients and/or Families
Link to Resource: https://nccrcg.org/wp-content/uploads/Telewhat-Infographic.pdf

Name: What to Expect From a Telegenetics Visit
Type of Resource: Video Resource
Developed By: Western States Regional Genetics Network (WSRGN)
Intended Audience: Patients and/or Families
Link to Resource: https://www.youtube.com/watch?v=-h-XRYtLEn8&feature=youtu.be

Name: COVID-19 Telehealth Toolkit 
Type of Resource: Guide 
Resource Developed By: National Consortium of Telehealth Resource Centers 
Intended Audience: Genetics Providers,Non-Genetics Providers,Patients and/or Families 
Link to Resource: https://www.telehealthresourcecenter.org/download/3/webinars/3557/telehealth-and-covid-19-final.pdf 

Name: Compilation of Telehealth & Telegenetics Resources 
Type of Resource: Resource Repository 
Resource Developed By: National Genetics Education and Family Support Center (NGEFSC) 
Intended Audience: Genetics Providers,Patients and/or Families 
Link to Resource: https://expectinghealth.org/sites/default/files/inline-files/Telehealth%20and%20Telegenetics%20Resources.pdf 

Name: Webinar Recording: Highlighting Family Perspectives on Telegenetics 
Type of Resource: Video 
Resource Developed By: National Genetics Education and Family Support Center (NGEFSC) 
Intended Audience: Patients and/or Families,Genetics Providers 
Link to Resource: https://youtu.be/eYHfPq_Q3X4 

Name: Webinar Slides: Highlighting Family Perspectives on Telegenetics 
Type of Resource: Presentation 
Resource Developed By: National Genetics Education and Family Support Center (NGEFSC) 
Intended Audience: Patients and/or Families,Genetics Providers 
Link to Resource: https://expectinghealth.org/sites/default/files/inline-files/Telegenetics%20Webinar%20Power%20Point_FINAL.pdf 

Resources for Specific Circumstances

Name: COVID-19 Pandemic Repercussions during Pregnancy & Breastfeeding
Type of Resource: Podcast Resource
Developed By: MotherToBaby
Intended Audience: Patients and/or Families
Link to Resource: http://mothertobabypodcast.libsyn.com/covid-19-pandemic-repercussions-du...

Name: Homocystinuria (Classical, Cobalamin, MTHFR) Emergency Toolkit
Type of Resource: Toolkit Resource
Developed By: HCU Network
Intended Audience: Patients and/or Families
Link to Resource: https://secureservercdn.net/198.71.188.149/2d3.505.myftpupload.com/wp-co...

Name: COVID-19 and Marfan/VEDS/LDS: Your Questions Answered
Type of Resource: Webinar Resource
Developed By: The Marfan Foundation
Intended Audience: Patients and/or Families
Link to Resource: https://www.youtube.com/watch?v=-8DIHKaXv-A

Name: Follow-Up Testing and Novel Coronavirus (COVID-19) 
Type of Resource: Infographic 
Resource Developed By: Baby's First Test 
Intended Audience: Patients and/or Families 
Link to Resource: https://www.babysfirsttest.org/newborn-screening/resources/follow-up-testing-and-novel-coronavirus-covid-19 

Name: What is a Genetics Nurse? 
Type of Resource: Website 
Resource Developed By: International Society of Nurses in Genetics (ISONG) 
Intended Audience: Non-Genetics Providers,Patients and/or Families 
Link to Resource: https://www.isong.org/page-1325153 

Coverage and Payment for Telehealth During COVID-19

Name: Coverage and Benefits Related to COVID-19 Medicaid and CHIP
Type of Resource: Fact Sheet Resource
Developed By: Centers for Medicare and Medicaid Services (CMS)
Intended Audience: Regional Genetics Networks,Genetics Providers,Non-Genetics Providers, Patients and/or Families,Public Health
Link to Resource: https://www.cms.gov/files/document/03052020-medicaid-covid-19-fact-sheet...

Name: States Modify Medicaid Home- and Community-Based Waivers to Respond to COVID-19 
Type of Resource: Website 
Resource Developed By: National Academy for State Health Policy (NASHP) 
Intended Audience: Genetics Providers,Non-Genetics Providers,Patients and/or Families 
Link to Resource: https://nashp.org/states-modify-medicaid-home-and-community-based-waivers-to-respond-to-covid-19/ 

Name: State Medicaid and CHIP Strategies to Protect Coverage during COVID-19 
Type of Resource: Website 
Resource Developed By: National Academy for State Health Policy (NASHP) 
Intended Audience: Genetics Providers,Non-Genetics Providers,Public Health,Patients and/or Families 
Link to Resource: https://www.nashp.org/state-medicaid-and-chip-strategies-to-protect-coverage-during-covid-19/ 

Availability of Telehealth Sites

Name: US Directory of Service Providers for Telemedicine and Telehealth
Type of Resource: Web Site Resource
Developed By: Arizona Telemedicine Program, Southwest Telehealth Resource Center
Intended Audience: Genetics Providers,Non-Genetics Providers,Administrators
Link to Resource: https://urldefense.proofpoint.com/v2/url?u=https-3A__telemedicine.arizon...

Name: Global COVID19 Telehealth Directory**
Type of Resource: Google Doc Resource
Developed By: Kanupriya Agarwal, Karan Kataria
Intended Audience: Genetics Providers,Non-Genetics Providers,Administrators
Link to Resource: https://urldefense.proofpoint.com/v2/url?u=https-3A__docs.google.com_spr...

**Disclaimer: for public informational purposes only, and support during COVID-19. Information herein not endorsed nor discredited. Utmost care taken to provide accurate and updated information. May not be exhaustive nor complete. No personal or financial liability. -- Kanupriya Agarwal, Karan Kataria (Owners).

Genetics Clinics in New England

Name: Clinical Services Directory
Type of Resource: Directory Resource
Developed By: National Coordinating Center for the Regional Genetics Networks (NCC)
Intended Audience: Genetics Providers,Non-Genetics Providers,Regional Genetics Networks,Patients and/or Families,Public Health
Link to Resource: https://clinics.acmg.net

State-Specific Resources for Families

Name: Wyoming COVID Resources for Families impacted by Genetic Conditions 
Type of Resource: Fact Sheet,PDF 
Resource Developed By: Mountain States Regional Genetics Network (MSRGN) 
Intended Audience: Genetics Providers,Patients and/or Families,Public Health 
Link to Resource: https://www.mountainstatesgenetics.org/wp-content/uploads/sites/257/2020/04/covid-resources-WYOMING-4_16_20.pdf 

Name: Montana COVID Resources for Families impacted by Genetic Conditions 
Type of Resource: 
Resource Developed By: Mountain States Regional Genetics Network (MSRGN) 
Intended Audience: Public Health,Genetics Providers,Patients and/or Families 
Link to Resource: https://www.mountainstatesgenetics.org/wp-content/uploads/sites/257/2020/04/covid-resources-MONTANA-4_23_20.pdf 

Name: New Mexico COVID-19 Resources for Families impacted by Genetic Conditions 
Type of Resource: Fact Sheet,PDF 
Resource Developed By: Mountain States Regional Genetics Network (MSRGN) 
Intended Audience: Patients and/or Families,Public Health,Genetics Providers 
Link to Resource: https://www.mountainstatesgenetics.org/wp-content/uploads/sites/257/2020/04/covid-resources-NEWMEXICO-final-4_13_20.pdf 

Name: Arizona COVID Resources for Families impacted by Genetic Conditions 
Type of Resource: Fact Sheet,PDF 
Resource Developed By: Mountain States Regional Genetics Network (MSRGN) 
Intended Audience: Patients and/or Families,Public Health,Genetics Providers 
Link to Resource: https://www.mountainstatesgenetics.org/wp-content/uploads/sites/257/2020/04/covid-resources-ARIZONA-4_15_20.pdf 

Name: Utah COVID Resources for Families impacted by Genetic Conditions 
Type of Resource: Fact Sheet,PDF 
Resource Developed By: Mountain States Regional Genetics Network (MSRGN) 
Intended Audience: Patients and/or Families,Public Health,Genetics Providers 
Link to Resource: https://www.mountainstatesgenetics.org/wp-content/uploads/sites/257/2020/04/covid-resources-UTHA-4_13_20-clickable.pdf 

Diverse and Medically Underserved Communities

Name: Algunas cuestiones que debe conocer acerca de la visita de su hijo a la clínica de genética 
Type of Resource: Brochure 
Resource Developed By: New England Regional Genetics Network (NERGN) 
Intended Audience: Patients and/or Families 
Link to Resource: https://www.negenetics.org/sites/www.negenetics.org/files/libraries/nergn/Spanish_GeneticsClinicBrochure_2019.pdf 

Name: Eliciting culturally and medically informative family health histories from Marshallese patients living in the United States 
Type of Resource: Journal Article 
Resource Developed By: Heartland Regional Genetics Network (Heartland)
Intended Audience: Genetics Providers,Non-Genetics Providers,Patients and/or Families 
Link to Resource: https://onlinelibrary.wiley.com/doi/full/10.1002/jgc4.1249