Does Neuropathy Run in Your Family?
If you and other close family members have neuropathy, or share unexplained symptoms including widespread chronic pain or itching, chronic fatigue, fibromyalgia, irritable bowel, or unexplained nausea, you may have an inherited (genetic) form of small-fiber neuropathy. These conditions are rare and often difficult for general physicians to recognize. Some families go for generations without an accurate medical diagnosis or effective treatment. Or, you may be someone who has had a genetic test identifying neuropathy genes, and you have questions.
To help, NeuropathyCommons.org hosts a secure online registry for people with diagnosed or suspected inherited small-fiber neuropathy. The Neuropathy Gene Registry provides patients a private portal to access expert medical information and, if desired, connect with others with similar conditions.
If you have been diagnosed with a genetic neuropathy, please click the button for care and research.
If you suspect you have a genetic neuropathy, see About Genetic Testing.
A Team of Global Experts
The Neuropathy Gene Registry will connect you to internationally known experts. They can help with questions about genetic testing, identified neuropathy genes, and direct patients to our global neuropathy specialists. Our goal is to facilitate testing, diagnosis, and treatment, and help educate patients and providers. You can also ask your doctor to contact us on your behalf, if you prefer.
The registry will also help researchers to communicate with people with rare genetic neuropathies to learn more about these lifelong conditions. Based at the Massachusetts General Hospital Nerve Unit, the registry will allow geneticists to gain a fuller understanding of the symptoms associated with specific mutations, and what tests and treatments work best. The goal is to improve care and treatment for all people with these conditions.
We have a genetic specialist in your area.
Michelle Kvalsund, MD
University of Zambia
& University Teaching Hospital
Australia & New Zealand
Manoj Menezes, MD
Peripheral Neuropathy Service
The Children's Hospital at Westmead
Taiwan, Hong Kong, & China
Sung-Tsang Hsieh, MD PhD MPH
Attending Neurologist, Department of Neurology
Professor, Department of Anatomy and Cell Biology
National Taiwan University Hospital
Naama Orenstein, MD
Schneider Children's Medical Center of Israel
Clinical and Pediatric Genetics
Vincent Timmerman, PhD
Professor of Molecular Genetics
Flanders Institute for Biotechnology (VIB)
University of Antwerp
Francisco Gondim, MD MSc PhD
Professor of Neurology
Universidade Federal do Ceará
Hospital Leonardo da Vinci
Vincenzo Provietera, MD
"Maugeri" Clinical Scientific Institutes
Institute of Pavia
Stephan Zuchner, MD PhD
Professor for Human Genetics and Neurology
Chair, John D. Macdonald Foundation Department of Human Genetics
Co-director, John P. Hussman Institute for Human Genetics
University of Miami Miller School of Medicine, Miami, United States
Questions? Email us at NerveGenes@mgh.harvard.edu.
Gene Registry Fellow
Maike Dohrn, MD
RWTH Aachen University Hospital
Neurology, Neuromuscular Outpatient Clinic and Sodium Channel Network Aachen
Mary Kelley, DO
Associate Professor of Neurology
University of Texas Dell Seton Medical Center
Austin, United States
Gene Registry Intern
Massachusetts General Hospital Nerve Unit
Boston, United States
Anne Louise Oaklander, MD PhD
Director, Massachusetts General Hospital Nerve Unit
Department of Neurology
Harvard Medical School
Boston, United States