The SNAP25 community is partnering with RARE-X, a program of Global Genes, to build a Data Collection Program for SNAP25 families. When you participate in the SNAP25 Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.

The SNAP25 Community is building our Data Collection Program to ...

• Inform researchers how SNAP25 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 SNAP25 Data Collection Program will be patient-owned but enabled by the RARE-X technology platform. All data governance, consent, support, and data security will be put in place by RARE-X Program. SNAP25 families will benefit from a streamlined process for collecting research-ready data in a phased approach.

This is a pivotal time for us!  The SNAP25 Foundation is announcing our first Global Data Collection Program.  Many of us know what’s it’s like to go to the doctor and not get any answers to how having a SNAP25 mutation will affect our kids.  Being so rare, we have hit so many roadblocks to information, but we hope that is going to change!  With your help, and in tandem with RARE- X, we will gather the information needed, and get it to researchers, scientists and doctors.  With this information, we will be able to get answers to our questions about the disease and afford a better quality of life for our kids. 

To learn more, watch our Community Launch Video, which was hosted by RARE-X, recorded on February 11th, 2025.

DISCLAIMER
The information provided is not intended to be a substitute for professional medical advice, diagnosis or treatment.

Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website.