Support. Friendship. Hope.

Living with a rare disease can sometimes feel lonely. But you are not alone. PHA has a strong network of local support groups and an active online community. By reaching out to people who've been there, you will find fast PHriends who offer support, information and hope for the future. You can connect with the community however you prefer, whether that's on the web, on the phone, or in face-to-face support group meetings.

Walking for a cure at Baltimore Orioles Stadium

Connect

Online

• Discussion Board
  Share information and support on PHA's popular discussion board.
• Email Groups
  Stay in touch with PHers via email in the general community group, special interest groups such as parents or young adults, groups to share tips on getting involved in advocacy and awareness, or networking groups for leaders and medical professionals.
• Online Support Group Chats
  Attend daily online support group chat meetings.

Telephone Support Group for Parents
 

Local Support Groups

Find a support group near you and find information on your group's website.

Patient-to-Patient Helpline

Ask questions and receive support from other patients who have been there.

Stories

Our Journeys

Read about other PH community members' journeys with PH and share your own.