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 

Beyond PHA Resources is an Online support community for people dealing with grief, death, and major loss, with over fifty monitored support groups for both kids and adults. is a friendly, caring group of people who will walk alongside you through one of life’s most difficult experiences. You don’t have to go through the grieving process alone.

Compassionate Friends is a national, self-help organization for those grieving the loss of a child. Includes a Chapter Locator and supportive online brochures on various aspects of grief. has been established to create universal awareness and understanding of grief and provide a virtual community, without geographical boundaries, where individuals can connect, heal and memorialize their loved ones.

Sesame Street Grief Resources for Families

For those who have lost a Spouse 

Light a virtual memorial candle 

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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. PHA does not endorse or recommend any commercial products or services.

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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.