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Contact Registry

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The purpose of the INAD Contact Registry is to make sure that we have the most current contact and demographic data for individuals who have been diagnosed with INAD and other forms of PLA2G6-related neurodegeneration (PLAN) and their families. This information is being collected in order to:

  • Immediately notify potential participants for research trials.
  • To alert you of recent events and research findings.
  • Let you specify the way you would like to be contacted.

The INAD Contact Registry data is only accessible to the INADcure Foundation’s Board of Directors, staff, Scientific Advisory Board, and ultimately appropriately qualified researchers who have applied to the Foundation, through a rigorous scientific review process, for access to the data for research or to help accelerate clinical trial enrollments.

All information is strictly confidential. It will not be sold or provided to any other sources and will be used only for the purposes stated above. Contact us with any questions by email at

    Child’s Profile

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    Your Contact Information

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    Please submit as many photos of your child and family as you would like to share with us. The pictures that are most useful are about 2MB in size. This can be accomplished with a smartphone or camera. AT LEAST ONE IMAGE REQUIRED

    If you are new to the INADcure Foundation and would like information on how to get involved with fundraising for INAD research, patient engagement opportunities, or INAD awareness and advocacy efforts, please click this box and someone will follow-up with more information soon.

    By filling in the form above, I am giving the INADcure Foundation permission to share the attached photos and submitted information on the INADcure Foundation website, blog, social media, brochures, newsletters, and other media. I also understand that submitting this information is not a guarantee that this story will be featured.

    I agree to share my child’s story with the INADcure Foundation for the purposes stated above.