Interested in Starting a Support Group?

Design your own Young Adult Support Group

We define a support group as two or more people. It can be very simple or very elaborate depending upon where you live and the time you have to invest in starting up a group. We appreciate any time put into organizing patients, no matter the size of the group. Bringing patients together helps saves lives and promotes better health and happier living!

Getting Started

  1. Watch a Support Group 101 training video
  2. Learn about how to start a Young Adult Support Group
  3. Talk to a Support Group leader for advice
  4. See if your local PH treating physician can help
  5. Contact PHA to become officially recognized, or 301-565-3004 x755
    1. We’ll talk you through the process and help you with a plan of action for the first meeting.
    2. We’ll mail you a Support Group Leader Manual for the A to Z of starting a PH group. 
    3. We’ll connect you with additional resources. 
  6. Request a free Support Group Leader Manual and get started with PHA:
    Begin leader orientation 

PHA Resources for Official PHA Support Groups

  • A Support Group Website JUST for your group
  • Access to a special leaders-only email group for ideas and breaking news
  • Free educational materials, DVDs and a starter kit for your first meeting
  • Direct advertising of your meetings to our patients and members
  • Connection to industry sponsors who offer support, publicity and speakers
  • Monthly trainings through our Second Tuesday webinars and conference calls
  • Sponsorship for food at meetings

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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.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
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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.