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Join 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.

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!

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MPS and Mucolipidosis Registry: Together for A Cure

This registry is a coming together of leading MPS and Mucolipidosis (ML) organizations around the globe. Launched in 2014 with just two Sanfilippo (MPS III) advocacy organizations, this registry expanded to 22 international advocacy groups by early 2016. In the summer of 2016, through a partnership with the National MPS Society, the ConnectMPS registry has rebranded itself to become a centralized comprehensive global database that connects families, researchers, industry and all stakeholders in the MPS and ML community.  


By coming together, we not only demonstrate our unity toward a cure but offer researchers and industry the most efficient and uniform source for patient data to advance all treatments.


Join us today. Plus during account set-up, you will have the chance to join the National MPS Society mailing list and receive messages about relevant developments and clinical trial opportunities.


If you have any questions about participating in ConnectMPS, please Contact Us


Download the ConnectMPS flyer