top of page

Watch this recording to learn more about our RARE-X Data Collection Program

The mission of the FAM177A1 Research Fund is to improve the lives of patients with FAM177A1 Disorder.  Participating in a data-collection program is one of the most important ways that families of FAM177A1 patients can help us fullfill our mission.  


The purpose of the Data Collection Program is to provide de-identified patient data to researchers working on treatments for FAM177A1 Disorder and other related rare diseases. 


The FAM177A1 community is partnering with RARE-X, a 501(c)(3) nonprofit, to build a Data Collection Program for FAM177A1 families. When you participate in the FAM177A1 Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies. Since RARE-X is a nonprofit, there is no cost to you or the FAM177A1 community.


FAM177A1 Research Fund’s Data Collection Program will….

  • Make it easy for families to to upload patient information

  • Guarantee the information remains confidential 

  • Help speed up research and drug development

  • Reach more researchers world-wide  

  • Connect us with other patient organizations that present similarly to ours 

  • Give us the ability to update changes to symptoms at any time. 

  • Gives us the ability to manage who uses our data

  • Give patients the opportunity to participate in clinical trials


Our goal is to make this as easy as possible for FAM families.  Click on the link below to learn more and get started in the FAM177A1 Data Collection Program. The RARE-X team is standing by to help if needed.  

bottom of page