Helpful Resources
Connecting with other HPE families
Among its various public social media sites, Families for HoPE sponsors several groups on Facebook that connects HPE families and allows for the sharing of experiences, questions, etc. These are closed groups that require you to request membership and are moderated by Families for HoPE’s social media team.
For parents – https://www.facebook.com/groups/HPEandfamiliesforhope/
For dads –
For bereaved families – https://www.facebook.com/groups/HPEbereaved/
For teen siblings – https://www.facebook.com/groups/HPESibs/
Resources to view, download or print
HoPE Newsletter Spring 2023
HoPE Newsletter – Winter 2022
HoPE Newsletter – Conference 2022 Special Edition
HoPE Newsletter – Spring 2022
HoPE Newsletter – Fall/Winter 2021
Video – LIVING WITH HOPE: UNDERSTANDING HOLOPROSENCEPHALY
Parental Perspectives on Living with a Child with HoPE
Common Conditions Secondary to HPE
Reference List of Medical Professionals
Common Medical Tests
Common Therapy Options
Cerebral Palsy and HPE
Breath Sounds
Common Medical Abbreviations
Management of Children with HPE
Adolescents and Adults with HPE
Care for the Caregiver
Give and Take for the Caregiver
CircleOf caregiving app for HPE families
Helpful Resources
Connecting with other HPE families
Among its various public social media sites, Families for HoPE sponsors several groups on Facebook that connects HPE families and allows for the sharing of experiences, questions, etc. These are closed groups that require you to request membership and are moderated by Families for HoPE’s social media team.
For parents – https://www.facebook.com/groups/HPEandfamiliesforhope/
For dads –
For bereaved families – https://www.facebook.com/groups/HPEbereaved/
For teen siblings – https://www.facebook.com/groups/HPESibs/
Resources to view, download or print
HoPE Newsletter Spring 2023
HoPE Newsletter – Winter 2022
HoPE Newsletter – Conference 2022 Special Edition
HoPE Newsletter – Spring 2022
HoPE Newsletter – Fall/Winter 2021
Video – LIVING WITH HOPE: UNDERSTANDING HOLOPROSENCEPHALY
Parental Perspectives on Living with a Child with HoPE
Common Conditions Secondary to HPE
Reference List of Medical Professionals
Common Medical Tests
Common Therapy Options
Cerebral Palsy and HPE
Breath Sounds
Common Medical Abbreviations
Management of Children with HPE
Adolescents and Adults with HPE
Care for the Caregiver
Give and Take for the Caregiver
CircleOf caregiving app for HPE families