Welcome to the ConnectMPS Patient Registry

  

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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J

oin the ConnectMPS registry to help move research at its fastest pace!

Your health information can add to what is known about how MPS and Mucolipidosis (ML) affect lives, and can move us closer to promising treatments. This data is so vital to research and treatment discovery that numerous advocacy organizations, each working for MPS-related diseases in their own ways, have united to create this collaborative program.

##READMORE##

To build on this momentum, this collaborative registry unites families and advocacy efforts to make de-identified data on MPS related diseases available to researchers and companies worldwide. Researchers and drug developers alike can better understand the progression of MPS and ML, accessible through a central, openly-accessible portal. Participants can receive information about the upcoming clinical trials most relevant to them.

In the past few years, there have been encouraging academic research and clinical trials in MPS and ML. This progress is because disease advocates work hard to fund research while families worked to amplify the voice of the patient by entering this registry. You can help build on these successes too. Help us provide as much data as possible on all MPS & ML diseases, as quickly as possible, to scientists worldwide!

View The Webinar

Join if you have one of the following:

Download our patient flyer here.

 

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Click here to register now!

J

oin the ConnectMPS registry to help move research at its fastest pace!

Your health information can add to what is known about how MPS and Mucolipidosis (ML) affect lives, and can move us closer to promising treatments. This data is so vital to research and treatment discovery that numerous advocacy organizations, each working for MPS-related diseases in their own ways, have united to create this collaborative program.

##READMORE##

To build on this momentum, this collaborative registry unites families and advocacy efforts to make de-identified data on MPS related diseases available to researchers and companies worldwide. Researchers and drug developers alike can better understand the progression of MPS and ML, accessible through a central, openly-accessible portal. Participants can receive information about the upcoming clinical trials most relevant to them.

In the past few years, there have been encouraging academic research and clinical trials in MPS and ML. This progress is because disease advocates work hard to fund research while families worked to amplify the voice of the patient by entering this registry. You can help build on these successes too. Help us provide as much data as possible on all MPS & ML diseases, as quickly as possible, to scientists worldwide!

View The Webinar

Join if you have one of the following:

Download our patient flyer here.

 

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