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 – Autumn 2023
HoPE Newsletter – Summer 2023
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