Funded By:
The National Organization for Rare Disorders, Inc. (NORD) is a 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. A rare disorder is a disease that affects fewer than 200,000 people in the United States . Twenty-five million Americans are affected by the more than 6,000 rare disorders. NORD is the primary non-governmental source of information on these disorders.
The NORD web site ( http://www.rarediseases.org/ ) has recently created a place where those with these “orphan” diseases can go to share information with and meet others in similar situations. The Rare Disease Community provides a place where those affected by rare diseases can post a question, support others or create a blog. This type of community is valuable for those with rare diseases who may feel isolated because of the rareness of their condition.
Areas available on the site are “About Me”, “Friends”, “Discussions”, “Blogs”, “Surveys” and “Messages”. Among the topics on the “Discussions” page are: Getting a Diagnosis, How My Disease Has Changed My Life, Financial Issues, and Tips for Caregivers. Here you can join an ongoing discussion or start a new topic of discussion to get input from others on a subject in which you are interested. Blogs are online diaries. You can use a blog to share stories and ideas with other readers. You can read the bog of others, comment on the bolg of others or you can create your own blog.
To become an active member of the community go to the “About Me” page and register. For some of the areas you must be registered in order to participate, other areas do not have this requirement..
