Tomorrow is a day of celebration, but TODAY is a day of ACTION. More than 70 patients advocates are on the Hill today meeting with Members of Congress. Please join them in the Lobby Day by taking 10 minutes to call your Representatives and ask them to support efforts to spur lifesaving treatments for rare diseases in honor of Rare Disease Day. Click here to TAKE ACTION, fill in the form and follow the directions to receive the numbers for your Senators and Congress Member and sample scripts. TAKE ACTION NOW! Congress needs to hear from you!

Have 5 more minutes? Send letters to your Members of Congress to support specific legislation:
HR 3737 the Unlocking Lifesaving Treatments for Rare Diseases Act or ULTRA
S 606/HR 3059 the Creating Hope Act
Rare Disease Congressional Caucus

Thank you for your efforts to spur the development of lifesaving treatments for patients with rare diseases. Share this email with your family, friends and colleagues. Encourage your networks to take action. Together we can make a huge impact!

2 thoughts on “Take Action: Tell Congress Rare Diseases Patients Deserve Treatments”

  1. Nancy Curry says:

    I am on my last appeal. It is in front of the death committee. I hold out no hope they will allow me the medication I need.So I will slowly now become paralized mind intact and die. I have done well on this for 12 years but their rules changed.

  2. TERESA SMITH says:

    congressman: MY GRAND DAUGHTER HAS A RARE DISEASE. MPS1. I STRONGLY SUPPORT THE HR 3737 THE UNLOCKING LIFESAVING TREATMENTS FOR RARE DISEASES ACT & ULTRA S 606/HR 3059 THE CREATING HOPE ACT RARE DISEASE CONGRESSIONAL CAUCAS. PLEASE HELP TO GET THIS ACTIVATED. TOGETHER WE CAN MAKE A DIFFERANCE

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