{"id":266,"date":"2024-11-20T20:37:41","date_gmt":"2024-11-20T20:37:41","guid":{"rendered":"https:\/\/www.brineura.com\/en-us\/?page_id=266"},"modified":"2026-03-12T13:45:58","modified_gmt":"2026-03-12T13:45:58","slug":"resources","status":"publish","type":"page","link":"https:\/\/www.brineura.com\/en-us\/resources\/","title":{"rendered":"Resources"},"content":{"rendered":"
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Resources for you and your family<\/h1>\n <\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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Connect with a growing community of support for CLN2 disease<\/h2>\n

Caring for a child who has CLN2 disease<\/span><\/span> can be emotionally and physically demanding. Connecting with other parents and healthcare professionals can help make the disease easier to manage. Fortunately, there are support resources available to you and your family.<\/p>\n

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Batten Disease Support and Research Association (BDSRA)<\/h5>\n

The BDSRA is committed to providing family support services and has experience coordinating travel logistics for CLN2 families. If you have a child with CLN2 disease, the BDSRA welcomes you and wants to answer your questions.<\/p>\n

Join the BDSRA community at <\/strong>bdsrafoundation.org<\/strong><\/a> or 1-800-488-4570. Contact Morgan DeBoth, BDSRA’s Manager of Family Support at <\/strong>mdeboth@bdsra.org<\/a>.<\/strong><\/p>\n

Connect at bdrsafoundation.org<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Noah’s Hope<\/h5>\n

Created by a family with 2 children affected by CLN2 disease, this organization has raised funds for research all over the world.<\/p>\n

Connect at NoahsHope.com<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Hope4Bridget<\/h5>\n

Dedicated to raising awareness and funding for research, this site shares support and experience from a family raising a daughter with CLN2 disease.<\/p>\n

Connect at Hope4Bridget.com<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Layla and family<\/h2>\n

Layla is a patient with CLN2 disease<\/span>.
\nShe’s been on treatment with Brineura since 2015.<\/p>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n

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Newly diagnosed parents should reach out to the BDSRA. They are there for just that, support. They can connect you to other families going through similar stories. They can just point you in the right direction. They’re the best people to reach out to.<\/p>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t —Maria, Layla’s mom<\/span><\/cite>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/blockquote>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Resources for you and your loved ones<\/h3>\n

Download the following materials to help guide you on your own Brineura journey.<\/p>\n

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Starting Brineura<\/h5>\n

This convenient brochure gives you a quick introduction to Brineura® <\/span>(cerliponase alfa<\/span>)<\/span> and helps you and your family prepare for treatment.<\/p>\n

Download<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Roadmap to Brineura<\/h5>\n

This roadmap highlights major steps that you and your child may take on your road to Brineura treatment.<\/p>\n

Download<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Brineura Prescribing Information<\/h5>\n

This document educates patients about Brineura. It includes instructions for use and safety information.<\/p>\n

Download<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-266","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nResources - BioMarin Brineura Patient EN-US<\/title>\n<meta name=\"description\" content=\"Caring for a child who has CLN2 disease can be emotionally and physically demanding. 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