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ASO project description and what is needed going forward

The natural history database is getting an update, and we need your help

We are working with top scientists to edit out the mutation that causes AHC

Transgene therapy is another avenue of research that we are pursuing.

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.

Drug information insert with the medication Sibelium. Sibelium is the generic pharmaceutical name for Flunarizine.

If you’re the parent of a child with special needs, there are some tax strategies to be aware of that can save your family money. For example, you can deduct the cost of many out-of-pocket expenses on your federal taxes. In this article, you’ll learn about deductions as well as other strategic considerations such as tax credits.