Legislative Advocacy
HHT Foundation International, Inc. |
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| (Osler-Weber-Rendu Syndrome) |
HHT: A National Health Problem
Hereditary Hemorrhagic Telangiectasia (HHT) is a long neglected national health problem that affects approximately 50,000-70,000 Americans or 1 in 5,000 people. HHT research has so far been funded solely by private contributions. HHT has never received any federal research funding while several less prevalent disorders have received significant amounts of federal research money.
ACCESS the HHT Legislative Toolkit
READ the most current HHT Legislative Update.
BREAKING NEWS
MAKE YOUR VOICE HEARD!!!
Please take 2 minutes to email your Legislators in Washington and ask them to Co-Sponsor the "HHT Diagnosis and Treatment Act."
Click on HHT- LEGISLATIVE ACTION CENTER. Hit the blue "Take Action" button. A message has already been written, simply fill in your contact information and hit "Send Message".
HHT Authorization Bill Introduced in Congress
Co-Sponsor GOAL vs. ACTUAL
U.S. House of Representatives - 100 / 27
Senate - 35 / 7
List of the HHT Diagnosis & Treatment Act of 2011 Co-Sponsors
If you have contacted your Congressman and/or Senators and you don't see their name on this list, call their office and follow-up.
We are very excited to announce that on June 3rd, Representatives Elton Gallegly (R-CA) and Jim Himes (D-CT) introduced in the U.S. House of Representatives H.R 2123, the "HHT Diagnosis and Treatment Act of 2011" and on June 8th, Senator Tim Johnson (D-SD) introduced similar legislation in the U.S. Senate Bill S.1167.
ACTION NEEDED
In order for these bills to move through Congress and get passed into a law, we need to have as many Co-Sponsors in the House and Senate as possible. It is critical for you to contact your Senators and House Representative and ask them to Co-Sponsor the "HHT Diagnosis and Treatment Act of 2011." The HHT Foundation and numerous HHT member legislative volunteers have invested a great deal of time and resources to get us to this point and the future of these bills are in your hands. We need your involvement and have created 6 quick and easy steps to follow:
Congressional Visit Instructions
SENATE - Sample Co-Sponsor Request Letter
SENATE - Appointment Request Letter
HOUSE - Sample Co-Sponsor Request Letter
HOUSE - Appointment Request Letter
In addition to your letter, you should also send your Senators and House Representative a copy of the appropriate "Dear Colleague Letter"
SENATE - Dear Colleague Letter
Are you planning an HHT fundraising or awareness event? If so, consider asking all of those who attend to sign a legislative petition requesting their House Representative and Senators to pass the HHT Diagnosis and Treatment Act of 2011.
PETITION - House Representative
Your efforts are vital to our ability to succeed!
HHT Diagnosis and Treatment Act of 2011
On February 16th, 2011, fifteen HHT members including our Executive Director, two Board of Directors, two Medical Professionals from HHT Centers of Excellence, and several HHT members converged on Capitol Hill to meet with their Senators and House Representatives. Their purpose was to educate their Members of Congress on HHT and ask that they support HHT Legislation. Over 20 appointments were scheduled and conducted that day.
I'm thrilled to announce that we have our HHT Champions in the House and Senate for an Authorization Request. Representative Elton Gallegly of California and Representative Jim Himes of Connecticut will introduce this legislation called the "HHT Diagnosis and Treatment Act of 2011" in the House of Representatives. In the Senate, our champion is Senator Tim Johnson of South Dakota. This legislation will launch a new coordinated federal initiative to improve early diagnosis and appropriate treatment of HHT that will save lives and reduce health care costs. Please reach out to these Members of Congress and thank them if you are in their state and district.
We all owe a debt of gratitude to the HHT members that traveled to Washington D.C. to represent all who have HHT during Capitol Hill Day. They all did a great job!
HHT Authorization Bill Summary
June 2009 - First National HHT Awareness Month
The HHT Foundation, with our members support, was able to obtain bipartisan sponsorship in the U.S. Senate and in the U.S. House of Representatives for an HHT Resolution that recognizes June as HHT Awareness Month.
The SENATE passed Senate Resolution 161 declaring June 2009 as the First National HHT Awareness Month! Senate Resolution 161 was introduced by Senators Tim Johnson, South Dakota and Robert Bennett, Utah. If you are constituents from either of those states, please write or call your Senator to thank them for their leadership role in getting this resolution passed. You can find their contact information at www.congress.org. Just click on the link and put your zip code in the section called “My Elected Officials” on the left side of the page.
The HOUSE OF REPRESENTATIVES Resolution 536 was introduced on June 11, 2009 by Richard Neal of Massachusetts and was co-sponsored by 9 additional House Representatives.
HHT Legislative Action Plan
The HHT Foundation has a three pronged approach to our legislative plan which includes strategies in the following areas:
- Executive Branch
- Appropriation
- Authorization
Click Here to read about the HHT Foundation's plans for FY2011-2012.
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.
Congressional Members and Contact Information
Members of the Appropriations and LHHS Subcommittee
HHT Impact on the United States
Sample Request for Appointment Letter
How a Bill Becomes a Law - written explanation
How a Bill Becomes a Law - chart diagram
Glossary of Congressional and Legislative Terms
Reporting Your Progess to the HHT Foundation
Please make sure you send an email with your progress to me at the HHT Foundation Office so I can track all our legislative activity. It is so important to keep track of everyone’s results so that we can report to Congress the names of all the Senators and House Representatives that support us. This is the information I will need:
- Your name
- Individuals you have contacted
- Senator or Representative Name
- Staffer’s Name
- Title
- Email Address
- Brief Summary of Discussion: How did it go? What did you ask for? Did they agree to any action?
As you gain your Congressional Members support, please ask them if you have their permission to use their name as a supporter of the HHT Legislative Language and Funding Request. If they have sent a Support Letter on HHT behalf, make sure you ask them for a signed copy. In either case, please communicate this information to the HHT office so we can keep this list up to date for all to see.
Please feel free to contact our office at any time with questions or if you need any information. We are here to support you.
HHT Foundation International, Inc.
800-448-6389
sharon.williams@hht.org
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