Stacks Image 57008

Orthostatic Tremor

Orthostatic Tremor

Information, News, Research, and Discussion

Organizations and Groups

Join a group, start a group, look for answers and help.
Stacks Image 1569
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Aptes.org a French-speaking organization for essential tremor, rare tremors, myoclonus, and orthostatic tremor.

Eurodis is a non-governmental patient-driven alliance of patient organisations representing 624 rare disease patient organisations in 58 countries.

The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH) - to help people find useful information about genetic and rare diseases.

http://www.disabilityresources.org/ Disability Resources, inc. is a nonprofit organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently.

http://www.orthostatischetremor.nl - a website dedicated to OT based in the Netherlands

http://www.essentialtremor.org website of the International Tremor Foundation

USA -Social Security - Information on disability benefits

Tremor Action Network : National non-profit dedicated to increasing awareness of essential tremor by advocating for a cure through research. Offers support for patients, family members, and caregivers through a quarterly newsletter, videos, and guidance from advocates.

NZORD - the New Zealand Organisation for Rare Disorders, provides New Zealand's central starting point for information about rare diseases
ABOUT THIS SITE:
The purpose of this site is to share information about Primary Orthostatic Tremor (OT). Since my diagnosis, my quest to learn more about this disorder has been frustrating and difficult to track. Hopefully, for all persons interested in this disorder, this website will become a coordinating link for collecting information, contacting other people with OT, and spreading awareness of this problem. Here you will find an active forum, my story / blog, and many other people that have shared their stories, advice and tips on coping with Orthostatic Tremor. If you have any information, suggestions, stories or services that you would like to share please email me.
This website is intended to be an informal guide. Any information relating to a therapy, treatment or diagnosis must be received with caution. Only a physician is authorized to confirm its validity. It must not, under any circumstances, delay or replace the advice of the treating physician. And is not a substitute for medical advice.

medical disclaimer
website disclaimer