Taking part in a public or town hall meeting is a great way to build a relationship with your member of Congress and his or her staff and to raise the profile of the rare disease community to policy-makers. Such events generally take place in your community or district throughout the year and provide an opportunity for members of Congress to hear from constituents on a wide range of concerns.

To find out information on upcoming Town Halls go to your member of Congress’s website or call the office, if there is no information online. To find out who your members of Congress are go to: https://www.congressweb.com/kaki/legislators.

Tips for Preparing to Speak

  • Determine the purpose and tone of the event. Find out what the overall agenda of the meeting will focus on, who else is expected to participate or make a presentation and the anticipated “tone” of the meeting. This will help you to prepare your remarks and delivery style.
  • Use your network. Share information about the meeting with other advocates, partners and coalitions.
  • Encourage as many rare disease advocates to attend the town meeting as appropriate. This will lend support to your efforts and demonstrate to your policy-maker the extent of the community support for people with rare diseases.
  • Be prepares with accurate, timely and relevant information.

Tips for Presenting

  • Work to present your position or statement as early in the meeting as you are able, as press is more likely to attend and cover the first part of the event.
  • Keep your presentation brief. Limit your statement to three clear and concise points. Provide persuasive facts to assist participants to understand and remember your points.
  • Practice your statement to ensure you are comfortable and convincing when sharing your points with a larger audience.
  • Provide written copies of your statement to policy-makers, his/her staff and the press.
  • Inform your fellow advocates and RDLA staff on the outcome of the meeting.

Insider Tip: Arrive 20 minutes early to the Town Hall. Congressional Staff always arrive early to the events to set up. Introduce yourself to the staff and let them know why you are there.  Be respectful and polite and give them your contact information with a photo of your child or family.

Thanks to RareAdvocates.org for this excellent article.