News

A voice for the Undiagnosed Community

NORD is committed to developing patient registries for all 7,000 rare diseases. A patient registry is more than just a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the rare disease community through shared knowledge.

Many rare disease communities exist without the support of a formal patient advocacy organization, yet these groups of patients and caregivers still need champions! That is where NORD comes in. We aim to offer equal opportunity to all rare disease communities to contribute their data and inform and shape research, quality clinical care models, and the development of new products. NORD is pleased to announce that we are building a patient registry to support the Undiagnosed patient community. Longitudinal, natural history study data collected in the Undiagnosed Rare Disease Registry will support research and drive the discovery of better treatment options for those affected by rare diseases. Once NORD has launched the Undiagnosed Rare Disease Registry, an official announcement with instructions on how to join will be released. 

About the IAMRARE™ Registry Program

NORD’s IAMRARE™ 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. 

See our FAQ Document

For more information, email, nordregistry@rarediseases.org

 

Alone, your data is rare. Together we have strength in numbers.

 

NORD Launches Registry for Patients with Undiagnosed Rare Conditions

The National Organization of Rare Disorders (NORD)®, is pleased to announce the launch of the Undiagnosed Rare Disease Registry. The Undiagnosed Rare Disease Registry supports research on rare diseases and how they progress over time - natural history studies.

 

OVERVIEW OF RESEARCH STUDY

The Undiagnosed Rare Disease Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the undiagnosed rare disease community through shared knowledge. With the Undiagnosed Rare Disease Registry, participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the Undiagnosed Rare Disease Registry sponsor, NORD will ensure that data privacy and confidentiality are strictly maintained. Participation in the Undiagnosed Rare Disease Registry is free and voluntary, and participants may withdraw at any time.

 

COMMUNITY INVOLVEMENT

The Undiagnosed Rare Disease Registry is a powerful opportunity for individuals with undiagnosed rare diseases and their family members to contribute directly to research that will enhance understanding of their undiagnosed rare disease, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of these undiagnosed conditions - every patient experience is a unique and invaluable part of the natural history of undiagnosed rare disease.

 

About NORD

NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and patient services.

For more information please email nordregistry@rarediseases.org