While addressing the audience at the 1st NIH Conference on Holoprosencephaly (HPE), Dr. Francis Collins, Director of the National Human Genome Research Institute, noted that HPE is one letter short of spelling “hope”. He challenged his audience to be the “O” team and find the missing letter needed to change HPE into HoPE.
Today, Families for HoPE is helping to keep that spirit of hope alive worldwide.
Families for HoPE, Inc. was formed in 2006 by a group of parents of children diagnosed with holoprosencephaly (HPE). These dedicated parents first met through an online support group started by a small group of parents seeking information about HPE. Today, that online support group is over 500 members strong!
Our programs include:
parent-to-parent support
grief support
HPE family conferences
educational materials about HPE
educating the medical community
public awareness
The purposes of Families of HoPE are:
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To provide educational material and support to families impacted by
HPE through family conferences, workshops, newsletters and websites;
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To educate physicians and the medical community regarding issues
affecting children with HPE, and the best procedures for interacting
with patients and their families;
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To educate the general public regarding issues impacting individuals and families living with a diagnosis of HPE; and
- To organize, promote, or support camps, programs, special events and
related activities conducted for the benefit of individuals with HPE.
Families for HoPE seeks to share the HoPE in HoloProsEncephaly!
We hope you will join us in sharing the HoPE.
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