Living Rare Study: NORD Member Enrollment Survey

The Advocacy Organization's role is limited to sharing information about the Living Rare Study and directing interested individuals to the National Organization for Rare Disease’s Living Rare Study Team. The Advocacy Organization is not considered part of the research team and is not responsible for conducting any study activities.

The Advocacy Organization will use only recruitment materials and messaging provided by the National Organization for Rare Disorders and will not modify any of the study-related materials.

The Advocacy Organization will not offer payments, gifts, or other incentives to encourage participation in the Living Rare Study.

If enough participants who report a diagnosis of the disease represented by the Advocacy Organization enroll in Living Rare (at least 25 participants), the National Organization for Rare Disorders may provide an aggregate, de-identified summary report. Receipt of a disease-specific report is not guaranteed and depends on meeting the minimum participation threshold and having sufficient data available to generate a meaningful report while protecting participant privacy.

NORD staff is committed to developing reports that are meaningful and useful to participating organizations. Report format and content may be refined over time based on feedback from partner organizations, data availability, and privacy requirements. NORD will ultimately determine the final content of all reports.

Organizations may enroll as partners throughout the year; however, all partnerships expire on December 31st of the year in which they are established. Organizations wishing to continue participating must complete any renewal requirements established by the National Organization for Rare Disorders.

The National Organization for Rare Disorders reserves the right to modify or terminate a partnership if these requirements are not followed or if continued participation is inconsistent with privacy, regulatory, or other study-related requirements.