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IAMRARE® Registry Program

Rare diseases present unique challenges for researchers and companies working towards treatments and cures:

  • Small patient populations;
  • Hard to diagnose or delayed diagnosis due to lack of education and understanding among medical professionals;
  • Poor understanding of the natural history of the disease and its progression without intervention;
  • No prior pathways to follow; clinical endpoints that are often unclear; and
  • Enrollment and retention challenges.

To address the special needs of those developing treatments for rare diseases, NORD has created a natural histories patient registry platform as part of the IAMRARE Registry Program with extensive input from FDA, NIH, patients, organizations and experts in the field.

NORD’s platform is an easy to use system that allows patients and organizations to inform and shape medical research and translational science for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease – ultimately advancing product development.

Contact Us

[email protected]

What is a Registry?

Modern Powerful Features

  • NORD’s Registry Platform utilizes a cutting-edge, cloud-based design that is mobile-friendly, secure and easy-to-use.
  • Responsive and adaptive survey design enhances the participant experience and enables natural history data tracking.
  • Automated survey reminders encourage long-term participant engagement.
  • Role-based permissions allow for flexible project management.
  • Data visualization tools provide participants with real-time de-identified data for comparison to other patients.
  • Sub-studies encourage multi stakeholder collaboration and minimize community fragmentation.
  • Study resources include standardized surveys and access to rare disease Institutional Review Board (IRB) expertise.


Interested in joining or starting a registry?

Contact Us

[email protected]

Additional Resources

NORD has assembled the following resources and links to help patients, organizations, researchers and  companies interested in rare disease registries and natural history studies.

In 2019, NORD collaborated with Trio Health on a book based on natural history data. The Power of Patients: Informing Our Understanding of Rare Diseases is based on natural history data collected by NORD’s registry community and features a foreword by Janet Woodcock, MD, Director of FDA’s Center for Drug Evaluation and Research.

The book amplifies the experiences of individuals and families living with rare diseases and demonstrates the importance of registries and natural history data in helping to shape the rare disease landscape. By sharing stories, celebrating community-driven teamwork, and exhibiting data from NORD’s registries, The Power of Patients aims to illustrate the promise and potential of longitudinal natural history studies.

To request a full digital copy or printed version, please email [email protected]. Otherwise, you may download digital chapters below.


Chapter 1 – OMS 

Chapter 2 – PKU

Chapter 3 – Pemphigus and pemphigoid

Chapter 4 – SYNGAP1

Chapter 5 – Desmoid Tumor

Chapter 6 – ITP 

Posters and acknowledgments