Posts
Conference Planning Toolkit for Patient Advocacy Organizations
Find resources, templates, and insight on how to plan a conference!
Read MoreFrom 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.
Read MoreHelping Rare Disease Research with CRIDs
Learn how to create and add your CRID to your dashboard.
Read MoreNew Options Available for Claiming Simons Searchlight Survey Rewards
New instructions on how to redeem your online rewards for completing surveys.
Read MoreA Family Guide: Navigating Life After a Rare Genetic Diagnosis
The guide covers the path from genetic diagnosis to accessing resources and treatments.
Read MoreFrom Our Community: The Ultimate Rare Disease Resource Guide
Take a few minutes to dive into this comprehensive guide.
Read MoreVisit our New “Publications” Webpage
Review a list of published research papers made possible by our families.
Read MoreSimons Searchlight 2022 Family and Research Conference Videos and Pictures
Find conference videos and pictures from the 2022 Family & Research conference.
Read MoreNavigating the World of Rare Disorders
Knowing the cause of your child’s neurodevelopmental diagnosis can be a relief.
Read More