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Family Contact Registry

Join a community dedicated to advancing science, discovering treatments, and working towards a cure for PACS1 Syndrome.

Complete the form below to get updates from the PACS1 Syndrome Research Foundation!

•  Clinical research and study opportunities

•  Foundation Research Program updates

•  PACS1 Syndrome advocacy opportunities

•  Volunteer and fundraising opportunities 

Family Contact Registry

The PACS1 Syndrome Research Foundation will never sell or share your personal information. Aggregated, non-identifiable data may be used to gather insight about our PACS1 Syndrome community. As an example, we may review aggregate data on regional concentrations, gender distribution, and age at diagnosis to help in the design of new research studies. 

Relationship to individual diagnosed with PACS1 Syndrome:

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


If you answer "yes" to any of the questions below, a Foundation team member will contact you by email.

I'd like to learn more about how I can support the PACS1 Syndrome Research Foundation and the PACS1 community.
I would like to join the PACS1 Syndrome Research Foundation’s Private Facebook Group for Research Discussion (family members only).
Thank you for completing our contact registry!
If you have not yet done so, please consider sharing your child's story via our Warrior's Story Form.
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