Most of the NNPDF links point to the Home Page of an organization. The Home Page is like an index or table of contents. From the home page, you will probably have to move further into the site to get the specific information of interest - look for the topics closest to what you want and then explore those to find the details.
The kinds of topics we have found most common are: Gaucher disease, genetics, genetic diseases, lysosomal diseases, rare diseases, support groups, and Tay Sachs disease. Many sites have a mission statement or introductory section where you can see if the group provides the types of services or information you are looking for.
If a site Search button is offered, use it! It usually will search all the topics and pages, saving you a lot of time and effort.
These are organizations most closely related to Niemann-Pick research, support, and treatment. They generally have the most information about the disease. The technical level of the information can vary considerably between sites, so if one seems too complicated or too simple, try another.
These are sites with general medical information. Most of them have a method of searching for a specific topic, such as a symptom, a treatment, or a disease. These sites vary quite a bit in the kind of information they present - you can find consumer information, case studies, questions and answers, medical journals, and more links - but you can't find all of that on the same site.
Take some time to figure out what kinds of information are included in the search. If you are looking for general information and the site contains mostly medical journals, back out and try a different entry on our Links page.
While Niemann-Pick itself cannot be treated, many of the symptoms can be treated. You will usually be most successful when searching for a specific symptom (cataplexy, dystonia, etc) or when you find links to other foundations concerned about that symptom. You should consult with your doctor about the use of any specific treatment - these sites provide general information which may or may not apply to an individual case.
Remember that not all symptoms are caused by Niemann-Pick! If you have symptoms that are indicative of a particular illnesses, ask your doctor for an evaluation.
These are companies which provide equipment and supplies for people with disabiliities. Other companies are included if they have items that families have found helpful.
These are support groups which deal with common problems connected to Niemann-Pick. Contact them for help with particular issues or problems. Many of these sites (and many of the medical sites) also include links to other groups.
Most of the support group sites are informational - that is, they display information (like the NNPDF site) - but others have searches, chat rooms, etc.
There are several kinds of public forums: message boards, mailing lists, and chat rooms.
A message board or bulletin board lets you post a message for other people on the Internet to read. The messages usually ask a question in the hope that someone can provide an answer. Answers can be posted on the message board or emailed directly to you.
A mailing list, list serv, or MajorDomo sends email messages to and from subscribers. Every subscriber gets a copy of the message and can submit a reply. Only subscribers see the messages and replies. NNPDF uses a Yahoo mailing list.
Chat rooms let you "talk" directly to other people in the chat room. The chat room shows what everyone is "saying" and you can reply immediately. It works just like a conversation except its slower (since everyone has to type what they are saying). Some chat rooms also schedule guests to talk about a specific topic and to answer questions. There must be at least two people in the room before you can chat. Sometimes you have to hang around the room for a while until someone else shows up.
Some support groups also provide message boards, mailing lists, and chat rooms as part of a larger site. Not all of these support groups are listed here - look through the links for Find Support Groups if you want to locate additional public forums.
These are useful or interesting items that don't fit in any of the other categories.
Many times a search takes you to the middle of the pages (like starting with our Links page instead of the main page). You may want to see what else the site has to offer. Look for a "Home Page" button or link. If that isn't available, try shortening the URL address (the http: thing). For example,