Imprint & Privacy Policy



5701 Connecticut Avenue

NW Washington, DC 20015


Phone: (925) 386-6664



Disclaimer: The information provided on this website is not intended to diagnose or treat a disease or disorder. Please direct any medical-related questions to your physician. The Foundation for ARID1B Research is not responsible for any errors or omissions on this website.

The Foundation for ARID1B Research is a non profit organization (EIN 88-1940774) dedicated to promoting research toward life-changing treatments for all individuals with ARID1B-related disorder.



Imprint & Privacy Policy

Privacy Policy

Privacy Policy

Effective as of July 1, 2022.  

This Privacy Policy describes the privacy practices of The Foundation for ARID1B Research (FAR), Inc (“The Foundation for ARID1B Research”, “FAR” “we“, “us” or “our“) and how we handle personal information that we collect through our digital properties that link to this Privacy Policy, including our website (the “Service”), as well as through social media, our marketing activities, our live events and other activities described in this Privacy Policy.  


• Personal information we collect

• How we use your personal information

• How we share your personal information

• Your choices

• Other sites and services

• Security

• International data transfer

• Children

• Changes to this Privacy Policy

• How to contact us

Personal information we collect

Information you provide to us. Personal information you may provide to us through the Service or otherwise includes:

• Contact data, such as your first and last name, email address, billing and mailing addresses, and phone number.

• Demographic Information, such as your city, state, country of residence, and postal code.

• Communications that we exchange with you, including when you contact us with questions or feedback, through the Service, social media, or otherwise.

• Transactional data, such as information relating to your donation or order history on or through the Service.

• Marketing data, such as your preferences for receiving our marketing communications and details about your engagement with them.

• User-generated content, such as profile pictures, photos, images, music, videos, comments, questions, messages, works of authorship, and other content or information that you generate, transmit, or otherwise make available on the Service, as well as associated metadata.  Metadata includes information on how, when, where and by whom a piece of content was collected and how that content has been formatted or edited.  Metadata also includes information that users can add or can have added to their content, such as keywords, geographical or location information, and other similar data.

• Relationship data, such as familial or other relationship to third parties whose personal information you may provide to us.

• Payment information needed to complete transactions and donations, including payment card information or bank account number.

• Promotional information, including information you share when you enter a competition, promotion, or complete a survey.

• Other data not specifically listed here, which we will use as described in this Privacy Policy or as otherwise disclosed at the time of collection.

Third-party sources. We may combine personal information we receive from you with personal information we obtain from other sources, such as:

• Public sources, such as government agencies, public records, social media platforms, and other publicly available sources.

• Data providers, such as information services and other third parties that provide donation, demographic, and other information.

• Our affiliate partners, such as our affiliate network provider and publishers, influencers, and promoters who participate in our paid affiliate programs.

• Marketing partners, such as joint marketing partners and event co-sponsors.

• Data about others. Users of the Service may have the opportunity to refer friends or other contacts to us and share their contact information with us. Please do not refer someone to us or share their contact information with us unless you have their permission to do so.

How we use your personal information

We may use your personal information for the following purposes or as otherwise described at the time of collection:

Service delivery.  We may use your personal information to:

• provide, operate and improve the Service and our business;

• communicate with you about the Service, including by sending announcements, updates, security alerts, and support and administrative messages;

• understand your needs and interests, and personalize your experience with the Service and our communications; and

• provide support for the Service, and respond to your requests, questions and feedback.

Research and development.  We may use your personal information for research and development purposes, including to analyze and improve the Service and our business.

Marketing and advertising.  We, our service providers and our third-party advertising partners may collect and use your personal information for marketing and advertising purposes:

Direct marketing. We may send you FAR-related or other direct marketing communications as permitted by law.  You may opt-out of our marketing communications as described in the Opt-out of marketing section below.  

To manage our recruiting and process employment applications. We may use personal information, such as information submitted to us in a job application, to facilitate our recruitment activities and process employment applications, such as by evaluating a job candidate for an employment activity, and monitoring recruitment statistics.

Compliance and protection.  We may use your personal information to:

• comply with applicable laws, lawful requests, and legal process, such as to respond to subpoenas or requests from government authorities;

• protect our, your or others’ rights, privacy, safety or property (including by making and defending legal claims);

• audit our internal processes for compliance with legal and contractual requirements or our internal policies;

• enforce the terms and conditions that govern the Service; and

• prevent, identify, investigate and deter fraudulent, harmful, unauthorized, unethical or illegal activity, including cyberattacks and identity theft.  

With your consent.  In some cases, we may specifically ask for your consent to collect, use or share your personal information, such as when required by law.  

Retention. We generally retain personal information to fulfill the purposes for which we collected it, including for the purposes of satisfying any legal, accounting, or reporting requirements, to establish or defend legal claims, or for fraud prevention purposes.  To determine the appropriate retention period for personal information, we may consider factors such as the amount, nature, and sensitivity of the personal information, the potential risk of harm from unauthorized use or disclosure of your personal information, the purposes for which we process your personal information and whether we can achieve those purposes through other means, and the applicable legal requirements.  

When we no longer require the personal information we have collected about you, we may either delete it, anonymize it, or isolate it from further processing.  

How we share your personal information

We may share your personal information with the following parties and as otherwise described in this Privacy Policy or at the time of collection.  

Service providers.  Third parties that provide services on our behalf or help us operate the Service or our business (such as hosting, information technology, customer support, email delivery, marketing, and website analytics).

Payment processors. Any payment card information you use to make a purchase or donation on the Service is collected and processed directly by our payment processor, Stripe, and our Customer Relationship Manager service provider, Kindful, who may use your payment data in accordance with their privacy policies,, and  

Professional advisors.  Professional advisors, such as lawyers, auditors, bankers and insurers, where necessary in the course of the professional services that they render to us.

Authorities and others. Law enforcement, government authorities, and private parties, as we believe in good faith to be necessary or appropriate for the compliance and protection purposes described above.

Business transferees.  Acquirers and other relevant participants in transactions involving the negotiation or completion of a merger, acquisition, reorganization, or sale of any portion of FAR’s assets.  

Your choices

You have the following choices with respect to your personal information.

Opt-out of marketing communications.  You may opt-out of marketing-related emails by following the opt-out or unsubscribe instructions at the bottom of the email, or by contacting us.  Please note that if you choose to opt-out of marketing-related emails, you may continue to receive service-related and other non-marketing emails.  

Declining to provide information. We need to collect personal information to provide certain services.  If you do not provide the information we identify as required or mandatory, we may not be able to provide those services.

Other sites and services

The Service may contain links to websites, mobile applications, and other online services operated by third parties.  For example, our Service may contain links to crowdfunding pages, including but not limited to Go Fund Me.  Go Fund Me may collect certain information from you when you visit its site or services, and Go Fund Me’s privacy policy is available at In addition, our content may be integrated into web pages or other online services that are not associated with us.  These links and integrations are not an endorsement of, or representation that we are affiliated with, any third party.  We do not control websites, mobile applications or online services operated by third parties, and we are not responsible for their actions. We encourage you to read the privacy policies of the other websites and mobile applications and online services you use.


We employ a number of technical, organizational and physical safeguards designed to protect the personal information we collect.  However, security risk is inherent in all internet and information technologies and we cannot guarantee the security of your personal information.

International data transfer

We are headquartered in the United States and may use service providers that operate in other countries. Your personal information may be transferred to the United States or other locations where privacy laws may not be as protective as those in your state, province, or country.  


The Service is not intended for use by children under 18 years of age. If we learn that we have collected personal information through the Service from a child under 18 without the consent of the child’s parent or guardian as required by law, we will delete it. We encourage parents or guardians with concerns to contact us.

Changes to this Privacy Policy

We reserve the right to modify this Privacy Policy at any time. If we make material changes to this Privacy Policy, we will notify you by updating the date of this Privacy Policy and posting it on the Service. If required by law we will also provide notification of changes in another way that we believe is reasonably likely to reach you, such as via email or another manner through the Service.  Any modifications to this Privacy Policy will be effective upon our posting the modified version (or as otherwise indicated at the time of posting). In all cases, your use of the Service after the effective date of any modified Privacy Policy indicates your acceptance of the modified Privacy Policy.

How to contact us


Mail: 5701 Connecticut Avenue NW, Washington, DC 20015

Phone: N/A


Get involved

The FAR families share a common goal: accelerating research to find meaningful treatments for ARID1B-RD. We have just started our journey and need your help!

Get involved

We are driven by the urgency to bring effective therapeutics to our children as soon as possible. To this end, we must direct funding and scientific resources to high-quality research on the most promising disease-modifying treatments for ARID1B-RD.

We are just getting started. With your help, we will reach further faster.

If you would like to donate your time, talent, and resources to support our mission, we would love to hear from you.

Please reach out at

Here are some of the many ways you can help make a significant impact.


Help Us Bring Life-Changing Treatments for Children with ARID1B-RD

Thank you for your support!

Donate by Wire

Please contact:

The Foundation for ARID1B Research (FAR) filed the 1023 form and will receive 501(c)(3) tax-exempt status in the following months. Donations will be retroactively tax-deductible to the fullest extent of the law.

Donations are used to fund will be used solely for developing life-changing treatments for ARID1B-RD. All of the FAR-funded research projects will be carefully vetted and approved by our Scientific Advisory Board.

Having trouble donating?

Contact us:

Data collection

Patient families have the power to help accelerate research to find treatments for ARID1B-RD by participating in our data collection program(s). Treatment development and evaluation rely on a thorough understanding of the targeted condition. It cannot be done without patients! To set the grounds for clinical trials, we are working to extend the knowledge of ARID1B-RD and characterize the most critical clinical endpoints to be addressed. Moreover, having a significant (many patients) and extensive (assessing diverse areas) database will allow FAR to attract the interest of clinicians, researchers, and pharmaceutical companies to collaborate in the search for treatment!

FAR’s Parent Database

FAR’s Parent Database is our primary means of getting to know our community and keeping in touch. It is based on a brief and straightforward survey (which takes 3-4 minutes to complete) that includes questions about contact information and your child’s diagnosis. You can complete the survey here.

The Global FAR Registry

The Global FAR Registry will involve a far more extensive data collection, assessing your child’s behavioral and medical condition. These data are critical for improving the understanding of ARID1B-RD and the design of future clinical trials.


FAR is a volunteer-led organization of parents and experts caring for those affected by ARID1B-RD. We rely on talented people's time, ability, and generosity. New volunteers are welcome and encouraged to help with:

  • Scientific and medical advisors
  • Social Media
  • Legal Counseling
  • Accounting
  • If you are interested in volunteering, please email for more information.


We solely rely on donations, grants, and fundraising initiatives to sustain our mission. We need your help raise funds to support treatment development for our loved ones with ARID1B-RD.

Create your fundraiser

Spread awareness and raise funds by creating your fundraiser. Click here for step-by-step instructions on how to make your fundraiser.

FAR Fundraising Event

Host your own fundraising event.

Shop via amazon smile

Please support us by choosing FAR as your favorite charity when you shop at (add a link).


Lorem ipsum dolor sit amet, consectetur adipiscing elit. Suspendisse varius enim in eros elementum tristique. Duis cursus, mi quis viverra ornare, eros dolor interdum nulla, ut commodo diam libero vitae erat. Aenean faucibus nibh et justo cursus id rutrum lorem imperdiet. Nunc ut sem vitae risus tristique posuere.

Accordion with symbols

In this example we have added a "plus" sign to each button. When the user clicks on the button, the "plus" sign is replaced with a "minus" sign.

Lorem ipsum dolor sit amet, consectetur adipisicing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat.

Lorem ipsum dolor sit amet, consectetur adipisicing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat.

Lorem ipsum dolor sit amet, consectetur adipisicing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat.