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The AHC community is partnering with RARE-X, a 501(c)(3) nonprofit organization, to build a Data Collection Program for AHC families. Participating in the AHC Data Collection Program will help accelerate research and the development of new drugs, devices, and other therapies.

The AHC Community is building the AHC Data Collection Program to …

Inform researchers how AHC changes over time
Enable better data to use in clinical trials
Give patients the opportunity to participate in clinical trials
Reduce the time it takes to study new medicines
Speed up the time to get treatments to patients
Enable the use of data as a placebo (instead of actual patients) in a clinical trial

The AHC Data Collection Program will be patient-owned but enabled by RARE-X technology. All data governance, consent support, and data security will be put in place by RARE-X. AHC families will benefit from a streamlined process for collecting research-ready data in a phased approach.

This will become the “hub” to which all other databases can connect, streamlining the research process.