Welcome to the Spastic Paraplegia and PLS Patient Insights Network

Bringing together families, clinicians and scientists. Share your voice to advance research.

  

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 voice matters. The Spastic Paraplegia Patient Insights Network (PIN) amplifies the voice of families living with Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) to help researchers and drug developers increase what is known and advance the search for better treatments, and a cure.
 

Because HSP and PLS are rare, they are often misdiagnosed, making the actual frequency difficult to determine.  With fewer than 20,000 cases in the United States it is vital that the patient experience be better understood. 

We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the Spastic Paraplegia PIN, we can safely connect participants with clinicians, researchers and drug developers and create a research-ready community for the benefit of all.

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Y
our voice matters. The Spastic Paraplegia Patient Insights Network (PIN) amplifies the voice of families living with Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) to help researchers and drug developers increase what is known and advance the search for better treatments, and a cure.
 

Because HSP and PLS are rare, they are often misdiagnosed, making the actual frequency difficult to determine.  With fewer than 20,000 cases in the United States it is vital that the patient experience be better understood. 

We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the Spastic Paraplegia PIN, we can safely connect participants with clinicians, researchers and drug developers and create a research-ready community for the benefit of all.

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