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rare diseases Sign Up Information

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5/16/2020
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Thank you. Your response to New Member Application has been saved.

You can resume this form at any time by going to https://www.tfaforms.com/forms/resume/4779877.

IMPORTANT: Your submission is considered incomplete until you resume it and press the submit button.
Raw DataRegistration StructureRegistration Form Text
Registration
First name
Last name
Title
Password
Email
Home address
City
State
Country
Zipcode
Password (confirm)
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
Platinum Membership - the highest level of NORD Membership for 501(c)3 tax-exempt organizations that meet our highest standards; membership allows for priority access to NORD's Member Benefits, including financial assistance for participation to NORD's Summit.
Gold Membership - NORD's membership level for 501(c)3 tax-exempt organizations that are not engaged in medical education, funding research, RFP review, registry coordination or any work involving a Medical Advisory Board. These organizations may also have a minimum of 3 members on their Board of Directors.
Please select...
Please select...
Please select...
Please select...
Do you want to add this person to any of the following? Please select all that apply.
Subscribe to e-newsletter
Add to Facebook group
Please select...
Do you want to add this person to any of the following? Please select all that apply.
Subscribe to e-newsletter
Add to Facebook group
Please select...
Do you want to add this person to any of the following? Please select all that apply.
Subscribe to e-newsletter
Add to Facebook group
Make additional contact for periodic email updatesPrimary Contact for Membership Who is your primary Contact?
Executive Director
Social Media Contact
Medical/Scientific Advisor
Please select...
Do you want to add this person to any of the following? Please select all that apply.
Subscribe to e-newsletter
Add to Facebook group
Make additional contact for periodic email updates Do you want to add additional people to receive NORD's monthly e-news and member communications?
Yes
Do you want to add this person to any of the following? Please select all that apply.
Subscribe to e-newsletter
Add to Facebook group
Application Questions Does your not-for-profit organization currently have 501c3 tax exempt status from the IRS (or foreign equivalent)?
Yes
No Have you filed for 501(c)(3) status?
Yes, we have filed and are awaiting decision
No, we have not filed but we intend to
How many full-time employees do you have?
All volunteer
Fewer than 5 full time employees
Between 5-10 full time employees
Please no acronyms or abbreviations What are the primary objectives of your organization? (Select all that apply)
Awareness
Education
Support for Patients & Caregivers
Research
Advocacy
Please select...
Please select...AkanAmharicArabicAssameseAwadhiAzerbaijaniBalochiBelarusianBengaliBhojpuriBurmeseCebuanoChewaChhattisgarhiChittagonianCzechDeccanDhundhariDutchEastern MinFrenchFulaGan ChineseGermanGreekGujaratiHaitian CreoleHakkaHaryanviHausaHiligaynon/IlonggoHindiHmongHungarianIgboIlocanoItalianJapaneseJavaneseJinKannadaKazakhKhmerKinyarwandaKirundiKonkaniKoreanKurdishMadureseMagahiMaithiliMalagasyMalayMalayalamMandarinMarathiMarwariMossiNepaliOdia (Oriya)OromoPashtoPersianPolishPortuguesePunjabiQuechuaRom
Yes
Do you have educational conferences?
Yes
No Do you work on federal and/or state advocacy initiatives?
Federal
State
Federal and State
No Do you offer patient services and/or support?
Yes
No Are you currently involved in research?
Yes
Please confirm that your organization meets all of NORD’s criteria for membership.  Dated by-laws showing that your mission and programs are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community. Bylaws must also detail the process for electing board members, as well as board term limits and a maximum number of consecutive terms a board member may serve.
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance Dated by-laws showing that your mission and programs are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community.
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance Programs that engage patients, caregivers, medical professionals and supporters in one or more of the following ways: research, professional education, public education & health promotion, health services, community services, advocacy and social action. 
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance An up-to-date website that fully reflects your mission and your diverse patient voices.
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance A minimum of 3 Medical and/or Scientific Advisors; a policy and procedures document for expectations and management of this Medical Advisory Board. Organizations have 2 years from approval of their membership to meet this standard.    
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance Any medical information your organization provides must be medically reviewed and vetted for accuracy by a scientific or medical advisor(s). 
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance The conflict-of-interest policy should clearly define a consistent process for dealing with conflicts including a) Defining responsible parties, financial interest; b) Determining whether a conflict of interest exists; c) Procedures for addressing the conflict of interest; d) Violations of the conflicts-of-interest policy, and e) Disclosure and recusal, consequences for violations. 
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance Your Board of Directors must not directly or indirectly have a significant business relationship with your organization which might affect independence in decision making – including, but not limited to employment by a corporation or for-profit enterprise with a vested interest in your disease state, organization and policies.  
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
No, our organization does not meet this qualification and we could use NORD's assistance Your organization must disclose on your website how donations are used. This may involve posting the Form 990, an annual report, or other appropriate information on financials, income, expenses, programs and beneficiaries. By posting the Form 990 or other appropriate financial information online and making it easily accessible, your organization is supporting and promoting methodical transparency.  
Yes, our organization meets this qualification
Not yet, our organization is working towards meeting this qualification
Data Name Data Type Options
First name   Text Box
Last name   Text Box
Title   Text Box
Password   Text Box
Email   Text Box
Home address   Text Box
City   Text Box
State   Text Box
Country   Text Box
Zipcode   Text Box
Password (confirm)   Text Box
  checklist
  button
  option 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
  option Platinum Membership - the highest level of NORD Membership for 501(c)3 tax-exempt organizations that meet our highest standards; membership allows for priority access to NORD's Member Benefits, including financial assistance for participation to NORD's Summit.
  option Gold Membership - NORD's membership level for 501(c)3 tax-exempt organizations that are not engaged in medical education, funding research, RFP review, registry coordination or any work involving a Medical Advisory Board. These organizations may also have a minimum of 3 members on their Board of Directors.
  dropdown Please select...
  dropdown Please select...
  dropdown Please select...
  dropdown Please select...
  checklist Do you want to add this person to any of the following? Please select all that apply.
  checklist Subscribe to e-newsletter
  checklist Add to Facebook group
  dropdown Please select...
  checklist Do you want to add this person to any of the following? Please select all that apply.
  checklist Subscribe to e-newsletter
  checklist Add to Facebook group
  dropdown Please select...
  checklist Do you want to add this person to any of the following? Please select all that apply.
  checklist Subscribe to e-newsletter
  checklist Add to Facebook group
  option Make additional contact for periodic email updatesPrimary Contact for Membership Who is your primary Contact?
  option Executive Director
  option Social Media Contact
  option Medical/Scientific Advisor
  dropdown Please select...
  checklist Do you want to add this person to any of the following? Please select all that apply.
  checklist Subscribe to e-newsletter
  checklist Add to Facebook group
  option Make additional contact for periodic email updates Do you want to add additional people to receive NORD's monthly e-news and member communications?
  option Yes
  checklist Do you want to add this person to any of the following? Please select all that apply.
  checklist Subscribe to e-newsletter
  checklist Add to Facebook group
  option Application Questions Does your not-for-profit organization currently have 501c3 tax exempt status from the IRS (or foreign equivalent)?
  option Yes
  option No Have you filed for 501(c)(3) status?
  option Yes, we have filed and are awaiting decision
  option No, we have not filed but we intend to
  option How many full-time employees do you have?
  option All volunteer
  option Fewer than 5 full time employees
  option Between 5-10 full time employees
  checklist Please no acronyms or abbreviations What are the primary objectives of your organization? (Select all that apply)
  checklist Awareness
  checklist Education
  checklist Support for Patients & Caregivers
  checklist Research
  checklist Advocacy
  dropdown Please select...
  option Please select...AkanAmharicArabicAssameseAwadhiAzerbaijaniBalochiBelarusianBengaliBhojpuriBurmeseCebuanoChewaChhattisgarhiChittagonianCzechDeccanDhundhariDutchEastern MinFrenchFulaGan ChineseGermanGreekGujaratiHaitian CreoleHakkaHaryanviHausaHiligaynon/IlonggoHindiHmongHungarianIgboIlocanoItalianJapaneseJavaneseJinKannadaKazakhKhmerKinyarwandaKirundiKonkaniKoreanKurdishMadureseMagahiMaithiliMalagasyMalayMalayalamMandarinMarathiMarwariMossiNepaliOdia (Oriya)OromoPashtoPersianPolishPortuguesePunjabiQuechuaRom
  option Yes
  option Do you have educational conferences?
  option Yes
  option No Do you work on federal and/or state advocacy initiatives?
  option Federal
  option State
  option Federal and State
  option No Do you offer patient services and/or support?
  option Yes
  option No Are you currently involved in research?
  option Yes
  option Please confirm that your organization meets all of NORD’s criteria for membership.  Dated by-laws showing that your mission and programs are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community. Bylaws must also detail the process for electing board members, as well as board term limits and a maximum number of consecutive terms a board member may serve.
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance Dated by-laws showing that your mission and programs are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community.
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance Programs that engage patients, caregivers, medical professionals and supporters in one or more of the following ways: research, professional education, public education & health promotion, health services, community services, advocacy and social action. 
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance An up-to-date website that fully reflects your mission and your diverse patient voices.
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance A minimum of 3 Medical and/or Scientific Advisors; a policy and procedures document for expectations and management of this Medical Advisory Board. Organizations have 2 years from approval of their membership to meet this standard.    
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance Any medical information your organization provides must be medically reviewed and vetted for accuracy by a scientific or medical advisor(s). 
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance The conflict-of-interest policy should clearly define a consistent process for dealing with conflicts including a) Defining responsible parties, financial interest; b) Determining whether a conflict of interest exists; c) Procedures for addressing the conflict of interest; d) Violations of the conflicts-of-interest policy, and e) Disclosure and recusal, consequences for violations. 
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance Your Board of Directors must not directly or indirectly have a significant business relationship with your organization which might affect independence in decision making – including, but not limited to employment by a corporation or for-profit enterprise with a vested interest in your disease state, organization and policies.  
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
  option No, our organization does not meet this qualification and we could use NORD's assistance Your organization must disclose on your website how donations are used. This may involve posting the Form 990, an annual report, or other appropriate information on financials, income, expenses, programs and beneficiaries. By posting the Form 990 or other appropriate financial information online and making it easily accessible, your organization is supporting and promoting methodical transparency.  
  option Yes, our organization meets this qualification
  option Not yet, our organization is working towards meeting this qualification
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