Bringing together patients, physicians, and researchers to improve the lives of those affected by these rare disorders.

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Research offers no guarantees, but discoveries cannot be made without your help. Every active role a patient takes is one step closer to finding new treatments.

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Primary Ciliary Dyskinesia Foundation's Network for Clinical Trials

Last week, the PCD Foundation welcomed patients, families, researchers, clinicians, and supporters to Chicago for An Evening to Ignite Hope, celebrating the launch of our Network for Clinical Trials. Watch the video from the evening to learn more about the Network and what your support makes possible: https://youtu.be/WFGkbsNj59M

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Patient and Doctor

NIH Announces Funding to Establish and Strengthen Rare Disease Research Groups

The National Institutes of Health (NIH) has awarded approximately $26 million in grants in the fiscal year 2025 to begin the fifth cycle of funding for the Rare Diseases Clinical Research Network (RDCRN).

Honeycomb-style infographic showing the structure of the Rare Diseases Clinical Research Network with consortia names

Bi-Allelic NOTCH3 Variants May Cause Early-Onset Vascular Leukoencephalopathy and More: RDCRN Research Roundup

New research: Bi-allelic NOTCH3 variants may cause early-onset vascular leukoencephalopathy; Review discusses sphingolipids in kidney diseases; Chest x-rays alone may not detect organ laterality defects in primary ciliary dyskinesia 

Scientists using microscopes in the laboratory