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):

Official Name of Organization(Required)

Acronym or Abbreviation for Your Organization

Website(Required)

Facebook URL

Twitter URL

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

Phone Number

Fax Number

Address

Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country

Primary Contact at Organization:

Name

First Last

Title

Email Address

Phone Number

Secondary Contact at Organization:

Name

First Last

Title

Email Address

Phone Number

Organization Information

Year Established or Incorporated:

Does your organization have 501(c)(3) charity status (or the international equivalent)?

Yes

No, but we have applied for 501(c)(3) status

Please provide a brief and concise description or summary of your organization, such as your Mission and Purpose Statement (to be listed on NORD's website):

Please list the name(s) of the disease(s) that are included in your organization’s educational materials and/or other programs or services:

Is there a registry or natural history study for your rare disease?

Yes, and we are involved in coordinating it.

Yes, but we are not involved in coordinating it.

No, but we are interested in creating one.

No, and we are not interested in creating one.

Would you like to be contacted by NORD's Membership Team to learn more about becoming a NORD member and how NORD can support your work?

Yes

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