resources

Professional and Support groups

• Weill Cornell Medicine Klinefelter syndrome Care Center

• AXYS: The New York Area Support Group for X and Y Chromosome Variations

• Cystic Fibrosis Foundation

• FORCE

• Gigi’s Playhouse

• Hermansky-Pudlak Syndrome Network

• Manhattan Autism Society

• Mount Sinai Perinatal Bereavement Program & Support Group Contact: Laurie Chameides, LCSW; Phone: 212-241-4685

• New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services

• New York State Clinical Geneticists and Genetic Counselors: Cancer Genetics

• New York State Genetic Counselors

• NYS Genetic Services Program

• Parent to Parent NYS

Telegenetics

• Center for Connected Health Policy

• MidAtlantic Telehealth Resource Center COVID-19 Toolkit

• National Consortium of Telehealth Resource Centers COVID-19 Toolkit

NYMAC Regional Genetics Network

• NYMAC Regional Genetics Network 1-on-1 Technical Assistance: nymactelegenetics@gmail.com

• NYMAC Regional Genetics Network Website

• NYMAC Regional Genetics Network Resources Flyer

• NYMAC Regional Genetics Network Program Planning Toolkit

• Western States Regional Genetics Network Telegenetics Toolkit

• CMS COVID-19 policy info 

• HIPAA and COVID-19 

Telegenetics info and resources for patients and families

• https://expectinghealth.org/sites/default/files/inline-files/Telegenetics%20Infographic_0.pdf

• Video: https://www.youtube.com/watch?v=-h-XRYtLEn8&feature=youtu.be

• Video: https://www.youtube.com/watch?v=-h-XRYtLEn8&feature=youtu.be

• https://midwestgenetics.org/resources/telemedicine-resources/

Telehealth Licensure

• Pre-COVID-19 Telehealth Licensure Info

• COVID-19 State Licensure Changes and Waivers for Telehealth Providers

Telehealth Funding Opportunities

• https://www.fcc.gov/document/guidance-covid-19-telehealth-program-application-process

• https://www.fcc.gov/document/fcc-proposes-100-million-connected-care-pilot-telehealth-program
  

Telehealth Technology

• Telehealth Technology Assessment and Resource Center has technology toolkits available to assist with selection: http://telehealthtechnology.org/

• Equipment List to Start Doing Telehealth Quickly

• MATRC Vendor Selection Toolkit

• HIPAA and COVID-19

Reproductive Health

• NYC abortion page 

• NYS abortion rights page

•  a gov sponsored website about human reproductive rights 

• links to articles, specifically focused on access to later abortion 

•  for the most accurate and up to date info on abortion access and laws 

• https://acog.az1.qualtrics.com/jfe/form/SV_ePbdNap5uEr5hqe

• genetics providers focused on reproductive justice 

• https://go.peoplepower.org/signup/vote-your-values-fight-for-rights/