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DC

Headshot of Mark Rudolph
Patient Advocate Spotlight: Mark Rudolph Supports and Connects the Dystonia Community
May 17, 2022

Mark Rudolph serves as president of the Dystonia Medical Research Foundation (DMRF), a patient advocacy group that supports individuals and families affected by dystonia. The dystonias are a large group of movement disorders causing uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts. Here, he shares his journey to rare disease advocacy, impactful work by the DMRF, and collaboration with the Dystonia Coalition (DC).

Patient Advocate Spotlight
DC
Dystonia Coalition
dystonia
Headshot of David Peterson, PhD
Senior Researcher Spotlight: David Peterson Develops Innovative Technologies for Dystonia
May 10, 2022

David Peterson, PhD, is an Associate Research Scientist at the Institute for Neural Computation, University of California San Diego (UCSD); Director of the Computational Neurology Center at UCSD; and a member of the Dystonia Coalition (DC). His research focuses on improving outcomes for patients with dystonia, a large group of movement disorders causing uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts. Here, he shares his start in rare disease research, exciting discoveries, and future goals.

Senior Researcher Spotlight
DC
Dystonia Coalition
dystonia
Dystonia Coalition logo
Consortium Spotlight: Advancing Discoveries in the Dystonias
May 05, 2022

The Dystonia Coalition is an international network of researchers and patient advocacy groups working to advance the pace of research in the dystonias, find better treatments, and ultimately a cure. Here, program manager Gamze Kilic Berkmen, PhD, and principal investigator Hyder Jinnah, MD, PhD, share the history of the consortium, current research, and future plans.

Consortium Spotlight
DC
Dystonia Coalition
dystonia
DC Career Development and Pilot Projects
New Dystonia Coalition Funding Opportunities: Career Development and Pilot Projects Programs
March 23, 2021

The Dystonia Coalition (DC) is seeking applications for its Career Development and Pilot Projects programs.

Dystonia Coalition
DC
Funding opportunity
Career development
Pilot projects
H. A. Jinnah, MD, PhD
Is it Tremor or Dystonia? New Research Aims for Better Understanding to Improve Diagnosis, Treatment
December 01, 2020

H. A. Jinnah, MD, PhD, principal investigator of the Dystonia Coalition, reports here on a recent paper published in Neurology that examines the relationship between tremors and dystonia.

Dystonia Coalition
DC
tremor
Dystonia Coalition
Dystonia Coalition Database Uncovers Characteristics of Upper Limb Dystonia
October 06, 2020

For the first time, researchers have comprehensively defined the demographic and clinical characteristics of upper limb dystonia, a rare disorder that affects muscles in the arms, forearms, and hands. Powered by the Dystonia Coalition database, the Movement Disorders publication is the largest study of limb dystonia to date.

Dystonia Coalition
DC
upper limb dystonia
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The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). The RDCRN websites are hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.