Research Updates

Read about the latest DYNC1H1 Research updates

Clinicians are working hard to build knowledge of DYNC1H1 Associated Disorders, and none of this would be possible without the patients and families who are stepping up to be a part of these studies.

We thank you.

6 Things to do after a DYNC1H1-Related diagnosis
Lisa Costen Lisa Costen

6 Things to do after a DYNC1H1-Related diagnosis

Receiving a DYNC1H1-related disorder (DRD) diagnosis can be incredibly overwhelming.  We’re here to help. These six steps can help you prepare for the future without overwhelming you in the present.  Each step has been carefully curated from the accumulated of years of experience from community members in conjunction with DYNC1H1-related disorder medical experts, educational experts, and best practices in the rare disease community.  The goal is to help you build a strong foundation for medical care and community support.

Read More