ADNP Related Research Projects
ADNP KIDS RESEARCH FOUNDATION
Coronis NeuroSciences is a specialty pharma company focused on the development of Innovative therapies for Neurocognitive and Neurodegenerative disorders.
Coronis’ pipeline currently includes an innovative drug for major for ADNP Syndrome and is in the pre-clinical stage. CP201 is the Coronis' leading drug and is developed to treat ADNP-Related Syndrome.
Coronis’ pipeline currently includes an innovative drug for major for ADNP Syndrome and is in the pre-clinical stage. CP201 is the Coronis' leading drug and is developed to treat ADNP-Related Syndrome.
ADNP Research project
This study is based out of the Medical Center of Genetics at the University of Antwerpen, Belgium.
If your child has an ADNP mutation, and you would like to participate in this ongoing study by sharing your child's medical history data, please have your genetic professional contact [email protected] or [email protected] as soon as possible. They can also be reached through www.adnpgene.com.
If the website is down, please email Anke Vandijck at the email noted above.
If your child has an ADNP mutation, and you would like to participate in this ongoing study by sharing your child's medical history data, please have your genetic professional contact [email protected] or [email protected] as soon as possible. They can also be reached through www.adnpgene.com.
If the website is down, please email Anke Vandijck at the email noted above.
TIGER STUDY
If your child has received an ADNP diagnosis, you are also eligible to participate in the TIGER STUDY at the University of Washington. They are doing research to find the genetic cause of behavior syndromes such as ADNP. Per an article recently written, the lead of the study Dr. Rafe Bernier stated that "ADNP is edging its way up the research agenda" and that is because more and more ADNP families are participating. The only way for our rare syndrome to become number on in the research community is by participation so please consider enrolling. The TIGER STUDY provides transportation, airfare, meals and hotels so there is no cost to families. Please contact them for more current information at THE TIGER STUDY
SPARK
If you have an ADNP diagnosed child who also has a Autism Spectrum Disorder or PDD diagnosis, please enroll your child into the SPARK study. This is a very simple saliva kit that they send to your family to mail back.
Enroll at this link and set up your account. They will send you a saliva kit and if you enroll the parents they will send you a $50 gift certificate. ENROLL IN SPARK FOR ADNP HERE
Enroll at this link and set up your account. They will send you a saliva kit and if you enroll the parents they will send you a $50 gift certificate. ENROLL IN SPARK FOR ADNP HERE
SIMONS VIP
For ongoing research on the ADNP gene and protein and on NAP (davunetide,under patent protection, Professor I. Gozes inventor), please contact Professor Illana Gozes at: [email protected] (please see publications).
Websites with direct ADNP syndrome information
Unique UK Rare Chromosome Disorder website (www.rarechromo.org)
www.rarechromo.org/information/Chromosome%2020/ADNP%20related%20syndrome%20FTNW.pdf
www.rarechromo.org/information/Chromosome%2020/ADNP%20related%20syndrome%20FTNW.pdf
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This information guide is not a substitute for personal diagnosis. Families should consult a medically qualified clinician in all matters relating to genetic diagnosis, management and health. Information on ADNP changes is a very fast-moving field and while the information in this guide is believed to be the best available at the time of publication, some facts may later be updated or change.
This information guide is not a substitute for personal diagnosis. Families should consult a medically qualified clinician in all matters relating to genetic diagnosis, management and health. Information on ADNP changes is a very fast-moving field and while the information in this guide is believed to be the best available at the time of publication, some facts may later be updated or change.