DoD Funding for Vascular Malformations (HHT) in Jeopardy!

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DoD Funding for Vascular Malformations (HHT) in Jeopardy!

This petition made change with 503 supporters!

Cure HHT started this petition to U.S. Senate

Dear HHT Community, 

Since fiscal year 2015, Congress has advanced research into HHT by including “vascular malformations” among the conditions eligible for study through the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). This designation has been requested annually for the past few years by Senator Christopher Coons (D-DE) and has been included in the annual Defense Appropriations Act! Thanks to this legislative initiative, DoD has funded over 23 million in significant new research for HHT!

Unfortunately, we were recently informed that the Senate version of the fiscal year 2021 Defense Appropriations Act inadvertently left the vascular malformations designation out of the PRMRP. This version of the bill has not yet been acted upon by the Senate, so there is still a small window of time to correct this oversight. However, this will require the support of more Senators and most importantly—YOU, our HHT Community!

Please ACT NOW (by 11/27/2020) and take the time today to sign this petition to encourage your Senators to contact the Senate Committee on Appropriations to ensure that “vascular malformations” for HHT are included in the final version of the fiscal year 2021 Defense Appropriations Act. The petition letter detailed below will be sent to U.S. Senators when you sign this petition. 

We need your HELP to continue our upward momentum of funding important research to improve and save the lives of those battling HHT! This is a crucial time and we MUST work together to get Vascular Malformations (HHT) back on the list. The key to this is the power of your voice!

Please reach out to your Senator today by signing this petition by Friday, November 27, 2020!

If you would like to send a personal email to your local representative, click here to view U.S. Senators in alphabetical order by state. 

 

____________VIEW SAMPLE PETITION LETTER_____________

As an individual and/or family member of a loved one diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) – an inherited blood vessel disorder – I am urging you to contact the Senate Committee on Appropriations to encourage them to include “vascular malformations” among the conditions eligible for study through the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). 

The “vascular malformations” designation has been requested annually for the past few years by Senator Christopher Coons (D-DE) and has been included in the annual Defense Appropriations Act. Thanks to this legislative initiative, DoD has funded significant new research on HHT.

Unfortunately, we were recently informed that the Senate version of the fiscal year 2021 Defense Appropriations Act inadvertently left the vascular malformations designation out of the PRMRP. This version of the bill has not yet been acted upon by the Senate, so it is not too late to correct this oversight. However, this will require the support of more Senators. It is imperative for patients who suffer from the many manifestations of HHT, including vascular malformations—which is a life-threatening complication of this disease, have consideration for this critical funding.

Senators - please take the time to contact Rachel Littleton at rachel_littleton@appro.senate.gov and John Lucio at john_lucio@appro.senate.gov and urge them to include the vascular malformations designation in the final fiscal year 2021 Defense Appropriations Act.

Thank you.

Victory

This petition made change with 503 supporters!