Welcome to the Dandy-Walker Alliance

Patient Insights Network

  

Join patients around the world in building the PIN community.

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Find out about research studies and clinical trials.

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Advance research and speed development of new treatments.

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T
he new Dandy-Walker Patient Registry (or PIN which stands for Patient Insights Network), allows people diagnosed with Dandy-Walker, their family members and researchers to gather and share information and health history in a safe, confidential, online database.
 
This registry will help us better understand the major health issues among individuals with Dandy-Walker, improve the natural history for the diagnosis and help us recruit for future pre-clinical research studies and therapeutic clinical trials all while educating the community and raising awareness regarding diagnosis, study of the causes and treatments.

Click here to register now!

T
he new Dandy-Walker Patient Registry (or PIN which stands for Patient Insights Network), allows people diagnosed with Dandy-Walker, their family members and researchers to gather and share information and health history in a safe, confidential, online database.
 
This registry will help us better understand the major health issues among individuals with Dandy-Walker, improve the natural history for the diagnosis and help us recruit for future pre-clinical research studies and therapeutic clinical trials all while educating the community and raising awareness regarding diagnosis, study of the causes and treatments.

LEARN MORE