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  • Home
  • Emily’s Story
  • About Us
    • Our Mission
      • Our Approach
      • Our Impact
        • 2019 Impact Report
    • Cystic Fibrosis
    • Meet Our Leadership
      • Scientific Advisory Board
      • Board of Directors
      • Leadership Team
    • Partner Organizations
  • Research
    • Areas of Focus
    • Awarded Grants
    • Publications
    • Patient Registry: CF Nonsense Mutation
    • For Researchers
      • Research Resources
      • Research Inquiries
      • Funding Opportunities
  • Events
    • Signature Events
      • 2020 Year-End Campaign
      • EENY: LIVE! Virtual Benefit
    • Events & Activities
  • Press & Media
    • EE in the News
    • Press Releases
      • EE Launches First Virtual Benefit
      • Spirovant Acquisition
      • FDA Approval of Trikafta
    • Awards
    • Videos
  • Take action
    • Donate to Emily’s Entourage
      • Donate Now
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  • donate

Patient Registry

Emily’s Entourage maintains a registry of individuals with nonsense mutations of Cystic Fibrosis. The purpose of the registry is to collect limited information about these individuals so that Emily’s Entourage may inform them about relevant research, clinical advances and drug trials.

To add your name and information to the database, please fill out the form below. 

 

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Emily’s Entourage
PO Box 71
Merion Station, PA 19066

Tax ID #45-3768161

Emily's Entourage
Website Managed By: Strategic Websites
  • Home
  • Emily’s Story
  • About Us
    ▼
    • Our Mission
    • Our Approach
    • Our Impact
      ▼
      • 2019 Impact Report
    • Cystic Fibrosis
    • Meet Our Leadership
      ▼
      • Scientific Advisory Board
      • Board of Directors
      • Leadership Team
    • Partner Organizations
  • Research
    ▼
    • Areas of Focus
    • Awarded Grants
    • Publications
    • Patient Registry: CF Nonsense Mutation
    • For Researchers
      ▼
      • Research Resources
      • Research Inquiries
      • Funding Opportunities
  • Events
    ▼
    • Signature Events
      ▼
      • 2020 Year End Campaign
      • EENY: LIVE! Virtual Benefit
    • Events & Activities
  • Press & Media
    ▼
    • EE in the News
    • Press Releases
      ▼
      • EE Launches First Virtual Benefit
      • Spirovant Acquisition
      • FDA Approval of Trikafta
    • Awards
    • Videos
  • Take action
    ▼
    • Donate to Emily’s Entourage
      ▼
      • Donate Now
      • Other Ways to Give
    • Get Involved
      ▼
      • Sign Up for Updates
    • Fundraise
      ▼
      • Start Your Fundraiser
      • What You Can Do
    • Shop EE
  • Blog
  • Contact Us