NORD Organizational Database Questionnaire

This form collects information for NORD's Organizational Database (ODB), which was established to provide organizations and resources for patients and families affected by rare diseases. Organizations can be included in the ODB if they provide free information and/or services helpful to individuals and families affected by one or more rare diseases; have a website; are non-commercial; are transparent regarding sponsors or sources of funding; and are transparent regarding sources and/or reviewers of medical information provided on their websites and/or publications.

Please note that the ODB is different from NORD's dynamic Membership Community. If you are not currently a member but would like more information, please visit our Membership web page or contact the NORD Membership Team at [email protected].

Organization Details (to be listed on NORD's website):

Organization Contact Information (to be listed on NORD's website):

Address

Primary Contact at Organization:

Name

Secondary Contact at Organization:

Name

Organization Information

Does your organization have 501(c)(3) charity status (or the international equivalent)?
Is there a registry or natural history study for your rare disease?
Would you like to be contacted by NORD's Membership Team to learn more about how NORD can support your work?

Would you like to receive periodic updates from NORD? If so, please sign up here: https://rarediseases.org/newsletter/

National Organization for Rare Disorders