The EveryLife Foundation, NORD and Global Genes are Asking Patient Advocates to Tell Congress to Save Orphan Drugs by GIVING THANKS for Rare Disease Treatments

The Orphan Drug Tax Credit (ODTC) is a key provision of the Orphan Drug Act, and promotes research spending on rare diseases by lowering development costs for manufacturers – but this is in jeopardy: the tax reform bill passed in November by the House would eliminate the credit altogether, and the Senate bill, which passed earlier this month, cut it nearly in half.

The EveryLife Foundation for Rare Diseases, NORD and Global Genes feel that without the Orphan Drug Tax Credit, investment in therapies for rare disease patients is at risk!  Before the Orphan Drug Act, manufacturers were often hesitant to invest in developing new treatments for rare diseases because the small patient population made it difficult to recover development costs.

TAKE ACTION NOW to preserve the ODTC by telling Congress why YOU are grateful for it!  Use #RareGratitude and put it to good use!

Here are 4 things you can do to show your #RareGratitude.  It only takes a few minutes to help 30 million Americans waiting for treatments to be developed.

  • Tweet your #RareGratitude!
    • Get inspired with the sample posts below. Tag your Senator and Representative by checking their username here.  Ask your followers to RT!
  • Facebook
    • Post a picture of yourself or your family holding this sign to show your #RareGratitude! Tag your Senator and Representative by checking their username here.
    • Visit your Senator’s and Rep’s pages by checking their username here, and post in the Comments section using a sample post below.
    • Ask your friends and family to do the same, or to share your post.
  • Email your Senator and Representative
  • Call your Senator and Representative


  • Orphan Drugs saved my life. Now we have to save the Orphan Drug Tax Credit for the 95% who don’t have treatments yet. #RareGratitude #SaveOrphanDrugs
  • #SaveOrphanDrugs for 30M Americans w/ #rarediseases who rely on future development of #OrphanDrugs: org/saveorphandrugs #RareGratitude
  • 30M Americans are counting on the Orphan Drug Tax Credit to save their lives. #RareGratitude #SaveOrphanDrugs
  • I’m giving thanks for the 600 new treatments developed because of the Orphan Drug Tax Credit. #RareGratitude. Preserve the ODTC for the 6,400 still needed! #SaveOrphanDrugs
  • The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. #RareGratitude. Please #SaveOrphanDrugs {insert picture of yourself}
  • I am a #raredisease patient who does not have a treatment. I’m giving thanks for the #OrphanDrug Tax Credit, because it gives me hope for the future. #RareGratitude. Please #SaveOrphanDrugs!
  • #RareGratitude means giving thanks this holiday for #OrphanDrugs. Please RT & take action to #SaveOrphanDrugs. Millions of #raredisease patients rely on it for the hope of a future treatment! Call Congress using org/saveorphandrugs


Every action showing #RareGratitude helps #SaveOrphanDrugs and millions of lives!  THANK YOU!