Welcome to the Hist1H1E Syndrome

Patient Insights Network

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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
his Patient Insights Network was created to develop a comprehensive data bank of individuals with HIST1H1E Syndrome.  This PIN (registry) will allow patients, family members and researchers to gather information in a safe, confidential, online database.  It will collect critical information to understand the history and progression of HIST1H1E Syndrome, to make it easier for researchers to study and for patients/families to find out more information about the characteristics of this syndrome.

Explore the HIST1H1E Syndrome Directory

Take health surveys and learn about the experiences of others living with HIST1H1E Syndrome. See how your health information fits into the larger picture of the HIST1H1E Syndrome experience around the globe. Receive notice of clinical trials and research studies, as well as the latest news in HIST1H1E syndrome  research.

This registry serves families living with  HIST1H1E Syndrome, Rahman Syndrome, and H1.4 

 Questions? Please contact us via email:  info@hist1h1e.org . Join us today!

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Click here to register now!

 
 
T
his Patient Insights Network was created to develop a comprehensive data bank of individuals with HIST1H1E Syndrome.  This PIN (registry) will allow patients, family members and researchers to gather information in a safe, confidential, online database.  It will collect critical information to understand the history and progression of HIST1H1E Syndrome, to make it easier for researchers to study and for patients/families to find out more information about the characteristics of this syndrome.

LEARN MORE

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