Dear FA Ambassadors / American FA families,

As we all know, the US Congress is currently working on tax reform. One of the current laws being reviewed is the Orphan Drug Tax Credit which was enacted as part of the Orphan Drug Act in 1983. This law is very beneficial to the FA community. It has successfully encouraged drug development in rare disease and we do not want to lose this incentive for research and therapy development.

NORD details the concern beautifully in their policy alert below and provides the links to enable you to contact your two Senators and House of Representative member. Phone calls are given more attention in government offices but if time or comfort does not permit a call, please join the effort by sending an email to your three representatives. On the NORD Alert, when you click on “emailing your senators” and enter your address, you are provided the text for your email, You can personalize the email message if you wish and type in your name at the bottom. When you click on “submit,” the email is sent to your two senators and one house representative. So, this important action should take only a few minutes.

All senators and house members will be important in the final vote and some will have more influence over what happens based on the committees on which they sit. If one of your senators or your house representative is among those listed below, your voice could be the one that sways their vote to support the Orphan Drug Tax Credit. Please contact them as soon as possible and urge them to vote to preserve this important incentive to treat and cure FA and other rare diseases.

Warm regards,
Ron Bartek & Brigid Brennan

US Senate
Committee on Finance

Chairman Orrin Hatch (UT)
Ranking Member Ron Wyden (OR)

Chuck Grassley (IA)
Mike Crapo (ID)
Pat Roberts (KS)
Michael Enzi (WY)
John Cornyn (TX)
John Thune (SD)
Richard Burr (NC)
Johnny Isakson (GA)
Rob Portman (OH)
Patrick Toomey (PA)
Dean Heller (NV)
Tim Scott (SC)
Bill Cassidy (LA)
Debbie Stabenow (MI)
Maria Cantrell (WA)
Bill Nelson (FL)
Roberty Menendez (NJ)
Thomas Carper (DE)
Benjamin Cardin (MD)
Sherrod Brown (OH)
Michael Bennet (CO)
Robert Casey (PA)
Mark Warner (VA)
Claire McCaskill (MO)

House of Representatives
Ways and Means Committee

Chairman Kevin Brady (TX)
Ranking Member Richard Neal (MA)

Sander Levin (MI)
John Lewis (GA)
Sam Johnson (TX)
Lloyd Dogged (TX)
Devin Nunes (CA)
Mike Thompson (CA)
Pat Tiberi (OH)
John Larson (CT)
Dave Reichert (WA)
Earl Blumenauer (OR)
Peter Roskam (IL)
Ron Kind (WI)
Vern Buchanan (FL)
Bill Pascrell (NJ)
Adrian Smith (NE)
Joseph Crowley (NY)
Lynn Jenkins (KS)
Danny Davis (IL)
Erik Paulsen (MN)
Linda Sanchez (CA)
Kenny Marchant (TX)
Brian Higgins (NY)
Diane Black (TN)
Terri Sewell (AL)
Tom Reed (NY)
Suzan DelBene (WA)
Mike Kelly (PA)
Judy Chu (CA)
Jim Renacci (OH)
Pat Meehan (PA)
Kristi Noem (SD)
George Holding (NC)
Jason Smith (MO)
Tom Rice (SC)
David Schweikert (AZ)
Jackie Walorski (IN)
Carlos Curbelo (FL)
Mike Bishop (MI)