Image and Story Consent Form

Consent agreement

Thank you for sharing your family's pictures, videos and stories with the ARRE Foundation. By allowing us to feature your family, you're helping us to meet our mission of improving the lives of people living with ASXL syndromes.

How are images, stories and testimonials used?
We use images and stories in a range of materials to promote the ARRE Foundation. This includes (but is not limited to) advertisements and publicity materials (leaflets, brochures, posters, direct mail and publications for the Internet). The ARRE Foundation will retain copyright of the image and story as part of materials to promote their work.

How long does consent last?
Consent continues with no time limit. Image and story consent can be changed or withdrawn at any time. We cannot withdraw images and stories already published.

Who can give consent?
Only a parent/legal guardian can give consent.

Consent agreement
I agree to the ASXL Rare Research Endowment Foundation (ARRE Foundation) using the image(s) and/or story and give hereby the ARRE Foundation permission to publish, use and republish the attached material, in whole or in part, in publications which describe the Foundation’s programs, funds and any of its activities as a community foundation.

The said material may include a photograph(s), video(s), stories, quotes and testimonials (written, audio or video recorded).

The said material may be used before a variety of audiences which may include the ARRE Foundation’s staff and directors, current and potential donors and grantees of the ARRE Foundation, the news media and the general public. Publication may appear in newsletters, annual reports, brochures, posters, website pages, social media or other forms of literature, including electronic and print.

I understand that I may withdraw this consent at any time by forwarding such request, in writing, to the ARRE Foundation.

Name of parent/guardian

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* First name

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* Last name

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* Email address

About the child/person with ASXL syndrome

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* First name

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* Last name

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* Which syndrome do they have?

ASXL1/Bohring-Opitz Syndrome

ASXL2/Shashi-Pena Syndrome

ASXL3/Bainbridge-Ropers Syndrome

Signature
By typing your name below, you are agreeing to the terms of the consent agreement

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* Signature of parent/guardian

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* Today's date

Date / Time

Date

Video consent

If you are consenting to the use of video and have provided to the ARRE Foundation by separate means (email, cloud storage, or other means), please describe below the content of the video(s) to which your consent applies.

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* Video description (if applicable)

Photo and story upload

Please upload your photos here. You may also upload a written version of your story in a Word document, or type it into the text box below. This form accepts the following file types: PDF, DOC, DOCX, PNG, JPG, JPEG, GIF.

If you have more than ten files to upload or if a file exceeds the 16MB limit, please email info@arrefoundation.org.

Image and Story Consent Form

Consent agreement

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* First name

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* Last name

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* Email address

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* First name

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* Last name

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* Which syndrome do they have?

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* Signature of parent/guardian

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* Today's date

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* Video description (if applicable)

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* File upload 1

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* File upload 2

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* File upload 3

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* File upload 4

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* File upload 5

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* File upload 6

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* File upload 7

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* File upload 8

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* File upload 9

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* File upload 10

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* Please share your family's story and/or information about these photos (optional)