Invite Members of Congress to Your Support Group Meeting

Judy Mattox and Susan Temple
Susan Temple, right, with Congressman Virgil
Goode’s district representative, Judy Mattox, at
a support group meeting

“Rep. Virgil Goode sent his district representative Judy Mattox [to our support group meeting]. She reported on the status of the PH Research and Education Act and the Ending the Medicare Waiting Period Act, then listened while group members educated her about living with PH.”
  - Susan Temple

Meet your elected officials without leaving your support group meeting! With some forethought and flexibility, you can create an exciting support group meeting while building co-sponsorship for PH legislation.

Identify the elected officials who represent your group members in Congress and gather the appropriate contact information. If a Member of Congress has more than one office in your state, look for the one closest to your meeting location. Find contact information for Members of Congress.

Learn whether your Members of Congress are co-sponsors of the Tom Lantos PH Research and Education Act, or if they’ve co-sponsored in the past. PHA can help and you’ll be prepared to build a positive relationship by thanking your senators or representative appropriately for past or current support. Contact PHA for an update on your elected officials’ sponsorship status at or 301-565-3004 x749.

Call or email the appropriate local offices. Invite each Member of Congress to attend your support group meeting, learn more about PH and speak to the group. View sample materials

Be flexible. If your Members of Congress can’t attend your next meeting, ask them to send a staff member, or invite them to a meeting later in the year.

Contact PHA! If a Member of Congress agrees to attend your meeting, PHA staff can help you prepare and send you briefing books to give to them. PHA can also provide materials for other types of advocacy activities for your group. Contact 301-565-3004 x749 or


Advocacy Chair

Consider appointing an advocacy chair to help keep advocacy on your support group’s agenda. PHA can help you or your advocacy chair plan advocacy themed support group activities like a letter writing day.

Photo ops

Elected officials will be happy for a photo op during your visit or support group meeting. PHA loves to include high resolution photos in Pathlight or on our website.

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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.