Legislative Toolkit

Here is all the information, pre-written letters, materials, instructions and training you need to make an effective advocacy effort. There are no excuses - it's time to ACT NOW .

Email Your Legislators

Support bills and message your legislators  and ask them to support amendments that will make a positive impact on the lives of those who have HHT.


Ask Family, Friends, Co-Workers, and Neighbors to Contact Their Legislators

Send your family, friends, co-workers, neighbors, etc. an email with information about legislation and ask them to support you by contacting their legislators.  Every entry is directly emailed or delivered to your representative. Each office keeps records on how many emails they receive.

You don’t have to have HHT to be an advocate!


Follow-Up with Your Legislators

Following-up with your legislator is very important! Check our sponsorship list regularly to see if your representative has joined the Cure HHT mission. If not, get on the phone with them or send them a letter.

> Find Your Senator    >Find Your House Representative

Don't forget to send your Senator or Representative a thank you letter following the meeting. Here are some templates for you to work from!

> Senate Thank You   > House Thank You

District Visits

Meeting with your legislators at home in their district offices is one of the most effective methods in gaining their support and co-sponsorship. Legislators are usually in their district office when Congress is in recess.

Additional Legislative Documents

HR 1849 HHT DATA Act Summary 2015

HR 1849 HHT DATA Act Dear Colleague Letter

Sample - Dear Congressman Letter

Senate - Sample Appointment Request

House - Sample Appointment Request

CDC Final Report - HHT June 2009

Advocacy 101

These resources will help you successfully and locate your Senators and House Representatives as well as guide you through the communication and appointment process.

How a Bill Becomes a Law - written explanation

How a Bill Becomes a Law - chart diagram

Glossary of Congressional and Legislative Terms