The Foundation for Sarcoidosis Research is sharing this urgent call to action from the National Organization for Rare Disorders (NORD):

WE NEED YOU to call, email, tweet, and message your Senators… Urge them to stand up for the millions of children and adults with rare diseases who rely on pre-existing condition protections and Medicaid.

View the official NORD statement and press release here.

As you read this, Senators are deliberating and will possibly be coming to a final decision on whether to support the American Health Care Act (AHCA) or similar legislation as part of an effort to replace the Affordable Care Act (ACA).

Over the next 14 days, the National Organization for Rare Disorders (NORD) will be announcing daily advocacy calls to action with opportunities for everyone to make their voice heard on healthcare coverage. You can sign-up for NORD’s policy action alerts here.

FSR encourages every sarcoidosis patient to amplify the voice of rare diseases and get involved with NORD’s “Days of Action” campaign by telling your Senators and Governor to vote no to the AHCA or similar legislation that would cut Medicaid and remove pre-existing condition protections by:

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


Sample messaging for calls, emails and social media, along with a list of Senators’ and Governor’s contact information, can be found at

BACKGROUND: In early May, the House passed the AHCA despite the voices of concern from the patient community. The bill included over $800 billion in cuts to Medicaid, that if enacted, could potentially cause your state to delay coverage of orphan drugsremove access to expensive specialty services, and weaken or end vital waiver programs for in-home care. In addition, the AHCA would remove key pre-existing conditions protections by again allowing insurers in certain states to charge premiums based upon your health status.