Welcome to the GM2 Tay-Sachs and Sandhoff 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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our experience matters in the quest to find treatments! Join the global community and share your experiences that are vital to the advancement of research toward effective and safe treatments. Privacy is of the utmost importance; therefore, your information will remain private and de-identified. This data will be an immensely important tool for understanding our community and will greatly impact the path of clinical trial readiness.
 
Your input is important! Whether your child has (or had) the infantile or juvenile forms of Tay-Sachs or Sandhoff, or if you are affected by the Late Onset form, your input is critical. We ask for you to share as much information as possible.

National Tay-Sachs & Allied Diseases Association (NTSAD), along with the Cure Tay-Sachs Foundation (CTSF), has launched the first GM2 Tay-Sachs and Sandhoff Disease PIN as a tool to collect data and patient experiences that could ultimately help promising research advance to clinical trials.

 

We are now in a critical space where the research and technology landscapes are evolving in the field of lysosomal storage diseases (LSD). We are seeing clinical trials launched for treatments of other LSDs which is hopeful for our group of rare diseases. To have success, the data must be strong and comprehensive, and that’s where you play a role.

 

Join the quest for treatments today!

 

 

NOW AVAILABLE

PATIENT ACCESS TO INVITAE'S GENETIC TESTING

Patients and families can now order the same genetic tests used by experts. Our easy-to-use, online experience offers guidance throughout the process from well-established, independent telemedicine providers.

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This link is for informational purposes. PIN participants may access genetic testing through whichever lab and/or provider they feel most comfortable

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Click here to register now!

Y
our experience matters in the quest to find treatments! Join the global community and share your experiences that are vital to the advancement of research toward effective and safe treatments. Privacy is of the utmost importance; therefore, your information will remain private and de-identified. This data will be an immensely important tool for understanding our community and will greatly impact the path of clinical trial readiness.
 
Your input is important! Whether your child has (or had) the infantile or juvenile forms of Tay-Sachs or Sandhoff, or if you are affected by the Late Onset form, your input is critical. We ask for you to share as much information as possible.

LEARN MORE

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