RARE Toolkits

Below is a list of all of our current RARE Toolkits.

Where To Begin…What Paperwork?
Where To Begin…What Paperwork?

Starting a nonprofit is no simple task, and there are many steps that should be taken to ensure your budding organization’s survival. This toolkit hopes to streamline the initial steps in an easily comprehensible and compact format. From completing all of the required paperwork to establishing internal structure, these instructions will help prepare you for this journey.

Please be sure to check out all of the toolkit’s components (the Perspectives Section, expert videos, and Resource Guide) in case you get stuck!


This is potentially the biggest operational hurdle you will face, but don’t get discouraged. We will help you navigate through the process! Also, make sure to watch the accompanying interviews that feature expert advice from others.

Fulfilling State Requirements

It is recommended to fully prepare before embarking on securing nonprofit status. So it’s helpful to have a 1-2 page synopsis of your nonprofit’s goals and the processes by which you hope to attain them. You should also make sure to write a list of all your resources (contacts, financial, etc.).

Each state has specific requirements, and they differ greatly. Find direct information regarding your state by going to USA.gov and searching “State Filings for Nonprofits.” But there are some similarities that this section will touch upon. Often, a department within the Secretary of State’s office handles the nonprofit incorporation, and these offices can mail informational packets on the incorporation process. Instructions that guide individuals through the process and sample templates are also available on their websites. To find your Secretary of State, go to Federal Election Commission.

One patient advocate elaborates on this process:

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…the hardest thing to understand and deal with is the fundraising and filing that is needed from state-to-state. It is daunting and easy to mess up on. I am still learning, and I have much more to understand, but the rules for funding, accounting and taxes are the most intimidating to people when they start their organization, especially if they are small or trying to do it all on their own (which is the case for many rare disease organizations).I used LegalZoom to do our Articles of Incorporation, our 1023 for the IRS 501(c)(3) process and the state filing for tax exempt status. It was the easiest and most inexpensive way for us to do this, and they gave excellent help. It was approved fast without issues, through the expedited process with the IRS. I also looked to the National Organization for Rare Disorders (NORD) and found the information helpful.I have e-filed to renew the Articles of Incorporation for years, but I had not looked back at the details in a long time. Things evolve in the process, especially when developing the Bylaws and doing the 1023 filing for IRS tax exempt status.


Karen Durrant

President & Founder, The NOMID Alliance

Incorporating has several benefits, including limiting personal liability and allowing the nonprofit to apply for tax exemption from the Internal Revenue Service (a topic explored later in this section).

But in order to incorporate your nonprofit organization, one important legal document you may have to prepare is an Articles of Incorporation (or in some states, a Certificate of Incorporation). This document verifies the organization’s name and its existence. And it is essential to note within it that no part of the organization’s assets will benefit its members. In order for it to be complete, signatures must be obtained from all incorporators while in the presence of a notary. Once this has been filed with a state government, the organization becomes a legal entity.

In addition, Bylaws of how the organization will be managed have to be created. These explain important procedures, detailing how directors are elected and their length of service, other positions within the organization and their duties, the frequency of meetings, etc. Please note that bylaws are determined by each state. Read a checklist of all the vital components of Bylaws at Blue Advocado.

Note: While submitting these documents to a state government, one may have to pay appropriate fees.

Fulfilling Federal Requirements

After the corporate filling offices return a copy of your filled articles, you can submit your federal 501(c)(3) tax exemption application to the IRS. This is known as the IRS Package 1023, Application for Recognition of Exemption. Please note that it can take three to twelve months for the IRS to return its decision, and it is best to file within 27 months after the date of your incorporation. Read the IRS application instructions by going to IRS.gov and searching “Application for Recognition of Exemption.”

Once your application has been received by the IRS, it will be reviewed and either approved, denied or placed on hold while the IRS gathers more information. To read instructions on filling out the proper forms, please access the IRS Publication 557, Tax-Exempt Status for Your Organization. The IRS also has a help line: 1-877-829-5500.

Although it may seem daunting, others have traveled this road before you. One patient advocate reflects on her experience filing her federal 501(c)(3) exemption application to the IRS:

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Our 501(c)(3) process was very clean and simple. It took us 5 weeks from the time we submitted our 1023 application until our tax-exempt status was approved.The biggest obstacle is people underestimate the amount of work that needs to be done beforehand. All the paperwork needs to be completely in order when you submit it because the IRS will kick back your form to you if they have any questions or discrepancies. The better you have all of your details organized and prepared, the quicker you will get your paperwork moved through the system.


Carrie Ostrea

Executive Director, Little Miss Hannah Foundation

Another patient advocate shares her experience of filing with the IRS, explaining how she believes her organization was quickly approved:

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The entire process of filing and then getting the confirmation letter to become a legal 501c3 with the IRS can take anywhere between 12-18 months. I was fortunate because I filed in November and was approved the following April—that is rare in itself. I think I was approved so quickly because I answered honestly and exactly to the point. I would advise others to try to keep it short, sweet and simple. The IRS doesn’t want long, drawn-out explanations.


Susan Noble

Founder & President, Epilepsy Warriors Foundation

States vary in regards to tax-exempt status. Some states require a separate application to get state tax exemption; some states are satisfied with your federal tax-exempt status, while others will request a copy of your IRS approval letter (also known as a determination letter). To find out what your state requires, contact your state tax agency.

Fundraising by State

Once you receive tax-exempt status from the federal government, many states and localities will require its nonprofits to register with the Charities Registration Bureau of the state/localities where you plan on fundraising. If you anticipate fundraising in multiple states, you may need to register in each state. One patient advocate explains what her organization did to secure fundraising capabilities.

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Cure JM Foundation is registered with the Department of Charitable Solicitations in every state where fundraisers are held. This department is generally part of the Attorney General’s office or the Secretary of State. The registration process can vary by state, but typically requires an initial report of finances and governance along with annual financial reporting.In terms of requirements, I always make sure we have the appropriate permits, insurance, licenses and approvals needed for any fundraising event. This will vary with the type of event and the location. Each state has different rules regarding raffles and anything that could be interpreted as ‘gambling,’ such as Monte Carlo events. Most states require a gaming license from the state’s Charitable Gaming Department.


Shari Hume

Co-Founder & Vice President of Marketing, Cure JM Foundation

State rules are summarized in the Multistate Filer Project. The state-by state index will give you a sense of whether you need to talk to your local charity-oversight officials before starting a campaign. Another great tool is the National Association of State Charity Officials. This collection of state offices regulates charitable organizations and charitable solicitation in the United States.

In addition to your state, your city may also require you to have a solicitation license before you can begin fundraising.

Finding Quality Assistance

It’s important when filling out these forms to seek guidance from experts—not just your friends who may be less familiar in these areas. There are lawyers and accountants who have direct experience working with nonprofits. They can be found through your state’s bar association, the Better Business Bureau, searches for experts in tax-exempt organization (or nonprofit) law or references from other nonprofit owners.

The Better Business Bureau is a nonprofit organization that collects and offers free business reliability reviews. It also alerts the public of potential scams.