ADNP Kids Research Foundation
  • About
    • What is ADNP
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  • RESEARCH
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    • Ketamine Update
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      • HIGHLIGHTS- ADNP Syndrome Family Conference
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  • NEWS
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    • Mount Sinai Launches First Drug Trial for ADNP Syndrome
    • Seaver Midtown Partnership
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    • NEWS - p.Tyr719* Case Study
    • NEWS HIGHLIGHTS- ADNP Syndrome Family Conference
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      • Past Fun Run Pictures
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CONTACT REGISTRY


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PATIENT CONTACT REGISTRY:

You must be a parent or patient with a confirmed ADNP mutation or deletion to be eligible for the ADNP Contact Registry. 

The ADNP Patient CONTACT REGISTRY allows diagnosed patients to stay up-to-date and informed on opportunities for research and the latest information regarding ADNP Syndrome and allowed them to be contacted by the foundation to inform them of such opportunities.


Our Contact Registry is NOT shared with external organizations ever.  We will contact those with completed contact registry data as noted above, via email from the ADNP Kids Research Foundation.  We may use aggregate data from the Contact Registry to publish statistics about the incidence of ADNP Syndrome.  When you complete the registry, you will be shown and up to date statistics from some of the questions, which will include your data immediately.

You may also receive family meeting announcements, special mailings, and information regarding any ADNP Syndrome.

By completing this form, you agree to allow ADNP Kids Research Foundation to store information about yourself and/or your dependent with ADNP Syndrome, so that you may be 'contacted' with information about both US and International research opportunities .  You understand that your de-identified data may be used in aggregate to compile and publish statistics about the incidence of ADNP Syndrome.

For an added level of security, our data is collected and stored on a business HIPAA compliant Survey Monkey platform.

YOU WILL NEED YOUR GENETIC REPORT TO COMPLETE THE REGISTRY AND BE ELIGIBLE TO CONTACT. 
  •  IF YOU NEED HELP NAVIGATING THE INFORMATION ON YOUR GENETIC REPORT OR HAVE ANY QUESTIONS, PLEASE EMAIL ADMIN@ADNPFOUNDATION.ORG FOR HELP.

Click here to join CONTACT REGISTRY here! 

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1st ADNP Family Meeting at UCLA, California (Nov 2019) 2020 event was cancelled due to Covid)
https://www.surveymonkey.com/r/ADNPcontactREGISTRY​
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Privacy Policy  |  Terms of Services  |  Other Policies  
All rights reserved. No portion of the content of this website may be reproduced in any manner without the written permission of the author/creator.   Any information used from this website must also have credit noted to ADNP Kids Research Foundation / www.adnpfoundation.org.
Disclosure: This page represents information known to the best of our knowledge.  Given the sensitivity and fast changing pace of research and drug development, some of the information posted on our website www.adnpfoundation.org may be inaccurate or not complete, therefor this information should be confirmed by the reader. Additionally, the medical information on this website is not substitute for personal diagnosis or medical care advise. Families and patients should consult a medically qualified clinician in all matters relating to genetic diagnosis, disease management and health. Information on ADNP research is a very fast-moving field and while the information here is believed to be the best available at the time of publication, some facts may later be updated or change. Please see additional disclosures on our PRIVACY POLICY page.
  • About
    • What is ADNP
    • Our Story
    • Our Mission
    • Our Team
    • Medical and Scientific Advisory Board
    • 501(c)(3) Determination
    • Inclusivity Statement
  • RESEARCH
    • Research Projects
    • Research Strategy
    • Ketamine Trial
    • Ketamine Trial Publication
    • Ketamine Update
    • Path to a cure
    • NET STUDY
    • publications
  • Families
    • Newly Diagnosed
    • ADNP Patient Registry
    • Contact Registry
    • Understanding the Basics
    • Worldwide Parent Ambassadors
    • contact us
    • ADNP Family Conference >
      • HIGHLIGHTS- ADNP Syndrome Family Conference
      • TSA Travel Help
      • #CureADNP
  • NEWS
    • NET Collaboration Study
    • Ketamine Trial Phase 2 Announcement
    • Mount Sinai Launches First Drug Trial for ADNP Syndrome
    • Seaver Midtown Partnership
    • Biomarker Discovered
    • NEWS - p.Tyr719* Case Study
    • NEWS HIGHLIGHTS- ADNP Syndrome Family Conference
  • ADNP STORE
  • DONATE/SUPPORT
    • Warrior Fun Run 2022 >
      • Past Fun Run Pictures
      • Sponsorship Opportunity
    • Boston Marathon
    • Third Party Fundraising
  • About Us new