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Contact Registry

By joining the PACS1 Syndrome Research Foundation's Contact Registry, you join a community dedicated to advancing science, discovering treatments, and working toward a cure for this rare debilitating neurodevelopmental disorder.
Stay informed:
  • PACS1 Syndrome research updates
  • Clinical research and study opportunities 
  • News from the PACS1 Syndrome Research Foundation 
  • PACS1 Syndrome advocacy opportunities 
  • Volunteer and fundraising opportunities with the Foundation

Contact Registry

The PACS1 Syndrome Research Foundation will never sell or share your personally identifiable information with a third party. However, aggregated de-identified data may be shared with third parties to gain insight and information about our community. For example, we may examine aggregate data on regional concentrations, gender distribution, and age at diagnosis to assist in designing new studies. Additionally, this anonymized data set will assist prospective partners in evaluating partnership opportunities with the PACS1 Syndrome Research Foundation and the PACS1 Syndrome community more quickly.

This section should be completed by the person who is filling out this form:

Relationship to individual diagnosed with PACS1 Syndrome:

Please tell us a little bit more about the individual in your life who has been diagnosed with PACS1 Syndrome:

Select an option
Race/Ethnicity
Has a diagnosis been confirmed via genetic testing:

If you answer yes to any of the below, someone from the PACS1 Research Foundation will reach out to you soon at the email address provided!

Thanks for submitting!
Has a diagnosis been confirmed via genetic testing: