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TBRS and DNMT3A Patient Registry

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We are excited to announce the launch of the TBRS and DNMT3A Patient Registry

We are excited to announce the launch of the TBRS and DNMT3A Patient Registry 2.0! The TBRS and DNMT3A Patient Registry creates a platform for patients around the world to strengthen their voices and share information about Tatton Brown Rahman Syndrome (TBRS), Heyn Sproul Jackson Syndrome (HESJAS), and DNMT3A-related disorders. All of these disorders involve DNMT3A gene variants, so study of them together may assist in furthering our understanding of them, separately and as a whole! Join now and let your data tell your story at tbrsregistry.iamrare.org! Make a difference in our community! Take the time to complete the TBRS Community Patient Registry surveys so we can start to understand TBRS and work toward developing treatments. Go to tbrsregistry.iamrare.org. Our TBRS Summit really demonstrated the importance of the registry to researchers! Participate in research at tbrsregistry.iamrare.org.  

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