For those for whom it would be helpful, PHA has a developed a resource, Mourning a Loved One: A Guide to Grieving. We welcome all loved ones to remain a part of our community for as long as it is beneficial.

For more information, or to request a print version of this guide, please contact or 301-565-3004 x803.

Email Mentors

PH Email Mentors are caring and knowledgeable members of the PH community. Mentors are available to support bereaved members of the PH community. Contact a Mentor 


This group is intended to provide a safe and supportive space for parents who have lost their child to PH or related conditions, as well as for those who wish to provide support.
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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.