National Organization for Rare Disorders Membership Application

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Thank you for your interest in NORD membership for patient advocacy organizations. You are one step away from receiving the many benefits and resources NORD provides its members, including support in the areas of drug development, board management, organizational governance, federal policy and regulatory affairs, research, fundraising, capacity building, and more. NORD's Membership Team looks forward to supporting you during the application process.

Which category of membership are you applying for?

Platinum Membership - NORD membership for 501(c)(3) tax-exempt organizations that conduct research activities, including drug development and coordinating patient registries. Gold Membership - NORD membership for 501(c)(3) tax-exempt organizations that do not conduct research and primarily focus on patient education and support.International Membership - NORD membership for charity organizations that are founded and based outside of the United States.

Organization or Patient Group Name

Please no acronyms or abbreviations

Acronym or Abbreviation for your Organization

Only include if your organization uses an abbreviation or acronym publicly. Separate multiple with a comma.

What year was your organization founded? (MM/DD/YYYY). If you don't know the actual date, use January 1 and the year.

In what state is your organization registered?

To be listed on the NORD website

Organization General Email

Website

Organization Phone Number

Organization Address

Address Line 1

Address Line 2

City

Country

State

Provinces

State/Province

Zip Code

Facebook

X (formerly Twitter) Handle

Instagram

LinkedIn Profile

Please enter your organization’s standard hashtags if used.

Separate multiple with a space

Application Primary Contact

Please provide the contact information for the individual the NORD team should contact with application-related questions. Upon approval of the application, this individual will be automatically added to the NORD membership portal and included on the membership newsletter distribution list. These preferences can be updated in the future as needed.

Prefix

First Name

Last Name

Suffix

Title

Role in Relation to NORD

Phone Number

Address Line 1

Address Line 2

City

Country

State

Provinces

State/Province

Zip Code

Is your Application Primary Contact (listed above) the same as your Organization Primary Contact? The Organization Primary Contact will serve as the primary point of contact for the NORD team for important, organization-wide questions (typically the Executive Director, Board Chair, Founder, or another senior staff member).

YesNo

Organization Primary Contact

Please provide the contact information for the individual who should serve as the primary point of contact for the NORD team for important, organization-wide questions (typically the Executive Director, Board Chair, Founder, or another senior staff member). Upon approval of the application, this individual will be automatically added to the NORD membership portal and included on the membership newsletter distribution list. These preferences can be updated in the future as needed.

Prefix

First Name

Last Name

Suffix

Title

Role in Relation to NORD

Phone Number

Address Line 1

Address Line 2

City

Country

State

Provinces

State/Province

Zip Code

If you would like to add additional contacts to this application, please do so below. You may indicate whether the contact should receive access to the NORD membership portal and be included on the membership email listserv.

Do you want to add additional contacts?

YesNo

Additional Contact

First Name

Last Name

Title

Role in Relation to NORD

Upon approval, please indicate which NORD benefits this contact should be automatically enrolled in:

NORD Membership Portal access Subscribed to the membership email listserv

Want to add another contact? Click the "Add another response" button below:

Application Checklist

Platinum or International Membership

The following documents are required to be submitted alongside your application:

Proof of 501(c)(3) tax-exempt status
A copy of your organization's by-laws (dated and signed). Bylaws must detail the process for electing board members.
The names and addresses of your Board Members (minimum of 5)
The names and addresses of your Medical and/or Scientific Advisors (NORD requests that members have at least 3 advisors)
A copy of your policy and procedures document for expectations and management of your Medical and/or Scientific Advisors
A copy of your operating budget
A copy of your Conflict-of-Interest Policy for Board and Staff (which defines COI and provides a policy to manage conflicts)
A copy of your Privacy Policy that protects the identity of patients and families
A link to your Financial Disclosure; where you link to your Form 990, an annual report, or other appropriate information on financials, income, expenses, programs and beneficiaries
Organization's logo

The following are recommended to be submitted alongside your application:

Copy of your most recent Form 990 (or annual financial report for international organizations)
Samples of educational materials and/or annual report

Gold Membership

The following documents are required to be submitted alongside your application:

Proof of 501(c)(3) tax-exempt status
A copy of your organization's by-laws (dated and signed). Bylaws must detail the process for electing board members.
The names and addresses of your Board Members (minimum of 3)
A copy of your operating budget
A copy of your Conflict-of-Interest Policy for Board and Staff (which defines COI and provides a policy to manage conflicts)
A copy of your Privacy Policy that protects the identity of patients and families
A link to your Financial Disclosure; where you link to your Form 990, an annual report, or other appropriate information on financials, income, expenses, programs and beneficiaries
Organization's logo

The following are recommended to be submitted alongside your application:

Copy of your most recent Form 990
Samples of educational materials and/or annual report

Please upload these documents below.

Files can be up to 25MB.

Please ensure your files are 25MB (25,000 KB) or smaller. Larger files will cause an error when you try to submit your application.

Accepted file types:
.doc, .docx, .xls, .xlsx, .ppt, .pptx, pages, .keynote, .key, .numbers, .pdf, .odt, .odt, .ods, .odp, .bmp, .gif, .jpg, .jpeg, .png, .tif, .qtf

Proof of 501(c)(3) status

Copy of Organization's by-laws

Name/Address of Board Members

Names/Addresses of Medical/Scientific Advisors

Organization's Logo

Operating Budget

Conflict-of-Interest Policy

Samples of educational materials

Annual report

Form 990

Medical Advisory Board Policies & Procedures

Link to financial disclosures on your website

Please enter the URL where the public can find your Form 990, annual reports and other information about the organization's financials

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