Policies & Photo Release

Privacy Policy

Dup15q Alliance is committed to protecting the privacy of our families. To better protect your privacy, we provide this notice explaining our information practices. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information, and content of your correspondence with us.

When you contact info@dup15q.org or use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within Dup15q Alliance or our professional advisors for a response. A copy of your correspondence may be retained at the Dup15q Alliance home office and also by the responding individual.

Dup15q Alliance has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, relatives, physicians, scientists, contributors and others interested in chromosome 15q duplication syndrome. Dup15q Alliance will never release our mailing list or the names of our member families to any outside organization or third party. However, if an outside organization sends us information for distribution to Dup15q Alliance families, we may mail it to you after the Board approves the mailing.

Information determined to be confidential can only be released by written or verbal permission by the person or organization identified. Verbal permission can only be given for a specific release. Any general release must be in writing.

The Dup15q Alliance website provides links to other sites that may be of interest. Dup15q Alliance is not responsible for the privacy practices or content of other such websites.

Dup15q Alliance is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the security of all personal information in our possession. Access to personal information will be limited to Dup15q Alliance board members and other individuals who have a need to use such information in the course of their work on approved projects. In all instances, this work will be directly overseen by a member of the Dup15q Alliance Board of Directors. All individuals will be instructed in the confidentiality requirements of the organization.

Logo Policy


The trademarks, logos, and service marks (“Marks”) displayed on this website, and related websites belonging to Dup15q Alliance, including the Dup15q Alliance logo, among others, are trademarks of Dup15q Alliance, are the property of Dup15q Alliance, and are protected. Their uses are restricted to those programs and events sponsored by Dup15q Alliance, and Dup15q Alliance trademarks may not be used for personal financial gain. Use of the Marks is prohibited without the express written consent of Dup15q Alliance. Nothing contained on this site should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Marks without the express written consent of Dup15q Alliance.

At times, Dup15q Alliance may grant limited-use licensing agreements to those individuals or groups who wish to help further the mission of Dup15q Alliance. Solely at the discretion of Dup15q Alliance, limited permission for use of Dup15q Alliance’s Marks may be granted for those projects which provide a substantial benefit to Dup15q Alliance or the chromosome 15q duplication syndrome community in general. For consideration, please submit, in writing, a letter of intent, which details how the Dup15q Alliance’s Marks will be used, the length of time they will be used, and the benefit of the project to Dup15q Alliance or the chromosome 15q duplication syndrome community to info@dup15q.org at least 45 days prior to launch. Letters of intent may also be sent to: Dup15q Alliance, PO Box 1669, Highland Park, IL 60035.

Use of Dup15q Alliance Name & Logo in Family Fundraisers

Dup15q Alliance supports families wishing to promote awareness and understanding of dup15q syndrome within their local communities. Dup15q Alliance will provide educational materials and, in certain instances, store items for fundraisers where 100% of the proceeds benefit the organization. These items along with the Dup15q Alliance logo will not be available for fundraisers with less than 100% benefiting the Alliance.

To request assistance from Dup15q Alliance for a fundraiser, the event coordinator should submit a request to the Executive Director or Vice President of Finance of Dup15q Alliance and provide a description of the event. This should also include the amount, if any, of monetary support requested along with a budget for the event. The budget should include a breakdown of how monies provided by Dup15q Alliance would be used and how the event coordinators expect to create their revenues.

The right to use of the name “Dup15q Alliance” will not be granted in any contracts unless approved and signed by the Dup15q Alliance Board of Directors.

Families wishing to use the Dup15q Alliance name and/or logo in their event should contact Dup15q Alliance at info@dup15q.org at least 45 days prior to their event with a proposal for intended uses of the name and/or logo.

Code of Conduct

AAAHandsThe Dup15q Alliance requires all Community members to adhere to this policy.   The Dup15q Alliance defines the Dup15q Alliance Community as all families, board members, paid staff, volunteers, affiliated clinicians/scientists, funded researchers, donors and extended supporters who have registered to be part of Dup15q Alliance activities and communications.

The Dup15q Alliance is committed to our Mission: “Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.”

The Dup15q Alliance is committed to doing this in an environment that conforms to the highest ethical standards.  This includes maintaining an environment free from any form of harassment, bullying, discrimination and retaliation related to gender, gender identity and expression, age, sexual orientation, disability, physical appearance, race, ethnicity, religious (or nonreligious) affiliation, politics, or any other personal characteristics

The Dup15q Alliance Community is expected to implement policies and practices that:

  • Foster a harassment-free environment.
  • Bring Solutions and Lead by Example.
  • Be Inclusive and respectful of people with different cultural practices, attitudes and beliefs.
  • Actively promote professional codes of conduct.
  • Ensure employees are fully aware and regularly reminded of applicable laws, regulations, policies and codes of conduct.
  • Provide an accessible, effective and easy process to report misconduct, with protection from retaliation.
  • Do not defame, abuse, harass, stalk, threaten or otherwise violate the legal rights (such as rights of privacy and publicity) of others.
  • Respond promptly to allegations, protect the safety of all involved, investigate the allegations, and, if appropriate, impose sanctions.
  • Do not violate another’s copyright or intellectual property.
  • Do not upload files that contain viruses or any other similar software or programs that may damage the operation of another’s computer or property of another.
  • Do not advertise or offer to sell or buy any goods or services for any business purpose, unless Dup15q Alliance specifically allows such messages.
  • Do not restrict or inhibit any other user from using and participating on the Dup15q Alliance Parent Facebook page.
  • Do not collect information about others, including email addresses or photos. Dup15q Alliance staff and board may collect this information. See our privacy policy for more information.
  • Do not violate any applicable laws or regulations.

By using or accessing our social media pages, you agree to comply with Facebook’s Terms and Conditions.

Notification of Allegation

Your notification of any concerns is essential to us. We cannot help resolve a problem unless we know about it. Therefore, please bring any concerns to our attention as soon as possible so that we can take whatever steps are necessary to address the situation

The Dup15q Alliance requires the submission of notice within 10 days of any allegation involving a Dup15q Alliance Community member including:

  • alleged breach of policies or codes of conduct;
  • alleged breach of statutes, regulations or executive orders including those relating to sexual harassment or assault;
  • any other alleged forms of harassment or misconduct.

Notification of Actions Taken

The Dup15q Alliance requires community members to submit notice within 3 days of any action involving a person working on Dup15q Alliance related business or grant with the foundation funds, including:

  • placement of that person on administrative leave;
  • imposition of an administrative action or sanction against that person;
  • referral of the matter to an external investigative body (e.g., law enforcement);
  • exoneration of that person.

Notifications should be sent to board@dup15q.org

If you have any questions or concerns, please email the Dup15q Alliance Board of Directors at.


The Dup15q Alliance Board of Directors

Photo Release

Dup15q Alliance Photo Upload and Release


I hearby grant Dup15q Alliance permission to use my/my child’s likeness in a photograph in any and all of its publications, including but not limited to, website entries, social media, newsletter entries or mailings, and videos without payment or any other consideration.

I understand and agree that these materials will become the property of Dup15q Alliance and will not be returned.

I hereby irrevocably authorize Dup15q Alliance to edit, alter, copy, exhibit, publish or distribute this photo for purposes publicizing Dup15q Alliance’s programs or for any other lawful purpose. In addition, I waive the right to inspect or approve the finished product, including written or electronic copy, wherin my likeness appears. Additionally, I waive any right to royalties or other compensation arising from or related to the use of the photograph.

I hereby hold harmless and release and forever discharge Dup15q Alliance from all claims, demands and causes of action which I, my heirs, representatives, executors, administrators or any other persons acting on my behalf or on behalf of my estate have or may have have by reason of this authorization.

I have read this release before signing below and I fully understand the contents, meaning and impact of this release. I understand that checking the box below and typing my name is equivalent to my signature.

received 742553859541418