Posts

Understanding the Importance of Sharing Your Annual Medical History

Discover the vital role you play in advancing rare disease research with Katina Calakos.

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Tanner’s Story Living With KDM3B

Learn more about Tanner’s KDM3B story.

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New Quarterly Data Reports – April 2024

Quarterly reports feature new information on 53 genetic communities, including 9 new groups.

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Leading the Way: An Interview with Rebeca Ridings Figueroa

Meet Rebeca Ridings Figueroa, Cure CLCN4’s Research Program & Charity Manager.

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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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Juniper’s Story Living With ASXL3

Learn more about Juniper’s ASXL3 story.

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Journey of Hope: Families Share Their Stories with Simons Searchlight

Listen to the heartfelt experiences shared by families like yours.

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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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Mariana’s Story Living With HECW2

Learn more about Mariana’s HECW2 story.

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Franklin’s Story Living With NR4A2

Learn more about Franklin’s NR4A2 story.

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