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Days of Action to Protect Your Healthcare Coverage

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 WE NEED YOU to call, email, and message
your Senators and urge them to vote no on the
Better Care Reconciliation Act (BCRA) and repealing without replacing the ACA!

Both options would be devastating to individuals with rare diseases. The time is now to take action and urge your Senators
to vote no on the BCRA. Learn more in this blog post from Paul Melmeyer.

Here are four ways you can take action and #ProtectPatientsNow

  1. Calling their DC and local state offices
  2. Contacting them on Twitter and Facebook
  3. Sending an email to their district office
  4. Posting a 30 second video and sharing it on social media, tagging them

For a list of Twitter handles and contact information for Senators by state, click here.

The Senate has released the Better Care Reconciliation Act (BCRA), an amended version of the American Health Care Act (AHCA) that passed the House in May.

If enacted, the bill will harm rare disease patients by cutting hundreds of billions of dollars from Medicaid, and removing key pre-existing condition protections. For further details on the bill and NORD’s opposition, read our statement here.

NORD is presenting opportunities for advocates to get involved and make their voices heard in order to protect the healthcare coverage of rare disease patients across the country who will be negatively impacted by
the Better Care Reconciliation Act (BCRA).


For the latest updates on the BCRA and how to get involved in this campaign, stay connected with NORD online.

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Advocacy Kit

The U.S. Senate just released the Better Care Reconciliation Act (BCRA), their version of the American Health Care Act (AHCA), and it includes several provisions that could be particularly harmful to individuals with rare diseases. For more background information, read our statement here.

YOU CAN HELP! Call your Senators NOW and urge them to vote no on the BCRA. Make a call by clicking on the button below.

The U.S. Senate just released the Better Care Reconciliation Act (BCRA), their version of the American Health Care Act (AHCA), and it includes several provisions that could be particularly harmful to individuals with rare diseases. For more background information, read our statement here.

YOU CAN HELP! Email your Senators NOW and urge them to vote no on the BCRA. Send an email by clicking on the button below.

By sharing similar messaging on social media, we can make a huge impact together and have the voice of the rare disease community heard on a large scale. We urge you to share messages often on social media for the next week to let Senators and the public know that the BCRA would be extremely harmful for rare disease patients.

Below are some suggested social media posts to use. For twitter handles and Facebook pages of Senators, click here.


Tag Your Senators on Twitter 

  • (@___________) the #BCRA hurts [ENTER STATE] #raredisease patients who rely on quality coverage. We deserve better. #ProtectPatientsNow
  • (@___________) [ENTER STATE] #raredisease patients say vote no #BCRA. Will you #ProtectPatientsNow?
  • (@___________) We Need You. Please #ProtectPatientsNow. #RareDisease patients in [ENTER STATE] rely on quality #healthcare coverage. Please VOTE NO.
  • (@___________) will you stand up for #raredisease patients in [ENTER STATE] by refusing to support the #BCRA? #ProtectPatientsNow
  • (@___________) will you stand up for #raredisease patients in [ENTER STATE] and #ProtectPreX & #ProtectMedicaid? Vote No #BCRA #ProtectPatientsNow

Post on Facebook/Instagram 

  • Patient advocates across the United States are rallying together to ensure that the Better Care Reconciliation Act of 2017 (BCRA) or similar legislation does not become law. Together, we can #ProtectPatientsNow and ensure that Congress does not pass this harmful legislation. I urge you to join the action with me today by getting involved. Whether you urge Senators and Governors to oppose the bill by making a call, sending an email, creating a video, sharing a graphic, or posting on social media; YOU CAN MAKE A DIFFERENCE. Get involved now. http://bit.ly/2tBYKXL
  • Share this post to make the voices of patient advocates across the country heard. We need to #ProtectPatientsNow! Patients and families cannot afford for the Better Care Reconciliation Act of 2017 to pass. Join us by taking action and getting involved in this effort here:  http://bit.ly/2tBYKXL
  • Millions of individuals around the country, including many with pre-existing conditions (genetic disorders, diabetes, childhood cancer, and more) depend on Medicaid for life-sustaining and life-saving care TODAY, we need to work together to ensure that patients will be able to access this care in the future as the Senate debates healthcare reform. YOU ARE NEEDED in an effort to fight back and ensure that legislation that would cut Medicaid and discriminate against individuals with pre-existing conditions, such as the BCRA, does not pass. Get involved today by clicking here  and take part in one or all of the activities outlined in an effort to #ProtectPatientsNow. http://bit.ly/2tBYKXL
  • There is no time to waste. Let’s take to social media to make the voices of the 30 million Americans with rare diseases who rely on affordable health care coverage heard. JOIN THE ACTION in an effort to #ProtectPatientsNow. @National Organization for Rare Disorders has outlined activities to get involved with in order to urge Congress to VOTE NO on the Better Care Reconciliation Act of 2017 (BCRA), a bill that would be devastating to the 1 in 10 Americans living with a rare disease. We need as many people to get involved in this effort as possible to make the most impact. Use #ProtectPatientsNow on social media and get involved by visiting this webpage full of activities to get involved with: http://bit.ly/2tBYKXL

General Messages to Share on Twitter

  1. ACT NOW. Participate in #NORD Days of Action to #ProtectPatientsNow & vote no  #BCRA: http://bit.ly/2tBYKXL
  2. The voice of one [YOU] can be added to the voices of many concerned patients who to #ProtectPatientsNow: http://bit.ly/2tBYKXL
  3. You can have an impact. You can ensure that #healthcare coverage is protected. #ProtectPatientsNow Get Involved now: http://bit.ly/2tBYKXL
  4. ACT NOW. Tell your Senator to #ProtectPatientsNow & Vote no #BCRA. How? Resources here: http://bit.ly/2tBYKXL
  5. RETWEET. The #raredisease community MUST ACT NOW. Download resources here to #ProtectPatientsNow: http://bit.ly/2tBYKXL
  6. The #BCRA hurts #raredisease patients in the U.S. who rely on coverage protections. #ProtectPatientsNow. Vote NO on the #BCRA
  7. #RareDisease patients say vote NO on the #BCRA. Call Senators to tell them to #ProtectPatientsNow: http://bit.ly/2tBYKXL
  8. Have you made a call yet? Have you made an action yet? Plenty of ways for you to #ProtectPatientsNow. GET INVOLVED: http://bit.ly/2tBYKXL
  9. RETWEET. TAKE ACTION NOW. We need to shout from the rooftops! # Vote NO on the #BCRA
  10. It is up to us to ensure that the Senate does not enact the harmful #BCRA. Get Involved to #ProtectPatientsNow: http://bit.ly/2tBYKXL
  11. America’s’ most vulnerable citizens [#raredisease patients] rely on good coverage. #ProtectPatientsNow VOTE NO #BCRA: http://bit.ly/2tBYKXL
  12. The time is NOW to take action & #ProtectPatientsNow. Vote NO #BCRA GET INVOLVED: http://bit.ly/2tBYKXL
  13. There are several provisions within the #BCRA that will be harmful to #raredisease patients. Vote NO. #ProtectPatientsNow

By sharing similar images on social media, we can make a visual impact and let Senators and the public know that the rare disease community opposes the BCRA. Please join us by sharing any of these images on social media, tagging your Senators, and use #ProtectPatientsNow

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Share Message on Social Media and Tag Your Senators

Download one (or more!) of the images below, print it out, fill in the blanks, post it on social media, and tag your Senators. By sharing pictures of the faces of those who will be impacted, Senators may feel compelled to vote no on this harmful legislation. Find the Facebook profile for your Senator here.

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protect-preX
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Tell Senators through video how the BCRA will impact your life as someone living with a rare disease. Take a short, 30-second video, save it on your device, upload it to social media, and tag your Senators. This is an easy and impactful way to show your Senators who you are and how the BCRA will affect you.

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