Support Groups...

Families for HoPE is a non profit organization that addresses the needs of families and children with holoprosencecphaly and related malformations of the brain. They provide support for all stages of holoprosencephaly. They have a yearly conference that everyone can come and meet each other and know that they are not the only ones. Here is the link to their support group:
http://familiesforhope.org/





The National Organization for Rare Disease website provides tools and resources for the families. There is a patient assistance program that can help with medications and other needs for them. They also provide workshops throughout the year for families and caregivers amongst other services.
http://rarediseases.org/   

This is a Yahoo group that provides support for holoprosencephaly. It is a restricted group and needs membership approval. Families for HoPE is part of this group.
https://groups.yahoo.com/neo/groups/holoprosencephaly/info






This group is also from Yahoo group and it's a loss support of holoprosencephaly. Again, it is a restricted group and needs membership approval.
https://groups.yahoo.com/neo/groups/holoprosencephaly/info