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Conference Planning Toolkit for Patient Advocacy Organizations

Find resources, templates, and insight on how to plan a conference!

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From Our Community: New Film ‘Davis Out of the Unknown’ Highlights Life with KdVS

New film created to highlight one family’s life with Koolen-de Vries Syndrome.

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Helping Rare Disease Research with CRIDs

Learn how to create and add your CRID to your dashboard.

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New Options Available for Claiming Simons Searchlight Survey Rewards

New instructions on how to redeem your online rewards for completing surveys.

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A Family Guide: Navigating Life After a Rare Genetic Diagnosis

The guide covers the path from genetic diagnosis to accessing resources and treatments.

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From Our Community: The Ultimate Rare Disease Resource Guide

Take a few minutes to dive into this comprehensive guide.

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Visit our New “Publications” Webpage

Review a list of published research papers made possible by our families.

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Simons Searchlight 2022 Family and Research Conference Videos and Pictures

Find conference videos and pictures from the 2022 Family & Research conference.

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Navigating the World of Rare Disorders

Knowing the cause of your child’s neurodevelopmental diagnosis can be a relief.

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