FARA has a number of article for newly diagnosed patients and including information on clicial trials.
http://www.curefa.org/message.html
The American Academy of Neurology (AAN) is a professional organization representing neurologists worldwide. This site provides information to both medical professionals and to the public. A "Patient Information Guide" is available under "Neurological Conditions" and has been developed by the American Academy of Neurology to help physicians and others locate patient-oriented materials and services for individuals with neurologic disorders.
The National Organization for Rare Disorders, Inc. (NORD) is a not-for-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that service them. Through its Rare Disease Database (RDB), NORD provides reports in understandable, layperson's terminology on more than 1,000 rare disorders.
The National Health Information Center (NHIC) is a health information referral service. NHIC puts health professionals and consumers who have health questions in touch with those organizations that are best able to provide answers. NHIC was established in 1979 by the Office of Disease Prevention and Health Promotion (ODPHP), Office of Public Health and Science, Office of the Secretary, U.S. Department of Health and Human Services. Included are announcements of new or upcoming activities; health information resource database, publications, Partnerships for Networked Consumer Health Information conferences, and the Department of Health and Human Services home page.
"Healthfinder" is a gateway consumer health and human services information Web site from the United States government. This site is intended to lead users to selected online publications and medical journals, clearinghouses, databases, Web sites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public. The aim is to provide information that can help the consumer make better choices about health and human services needs for self and family.
The Friedreich's Ataxia Parents Group (FAPG) is a closed list, limiting subscriptions to parents & guardians of children with Friedreich's Ataxia (or other childhood onset ataxias). From all over the world, parents who are having similar experiences raising children with FA communicate with one another.
http://www.fortnet.org/fapg/subscrib.htm