Do Your Own Research

Doing Your Own Research

Using the World Wide Web (internet)

To search the web, start with a ‘search engine’ page. Type in what you are looking in, hit enter, and the search engine gives you a list of page to look at. If you need help please email us.

  • Google, http://www.google.com is a comprehensive search engine. You can search the web, user groups, news, and images. Advanced search features similar sites and all sites linking TO a site. Google also contains sites by category.
  • Yahoo, http://www.yahoo.com, is one of the oldest web search engines.
  • To search on many search engines at once, use www.dogpile.com or www.metor.com. This is a powerful way to search the web.
  • Altavista, http://www.altavista.com has a useful feature: the near command. It allows you to search for two words in the same document that are close to each other. Altavista also has a translator which you can use to translated to an from many languages!
  • Search for listserves and newsgroups for people with dwarfism: Yahoo Groups.
  • Keep up with the latest of search engines: http://www.searchenginewatch.com .
  • Read Znet’s review of search engines, see http://www.zdnet.com/searchiq/reviews/ .
  • If you need help using search engines please email support@ksginfo.org .

     

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Find Medical Journals Papers (science magazine articles) on-line

  • The National Institute of Health, http://www.nih.gov/, has several invaluable resources as well as information in Spanish: http://salud.nih.gov/
  • Public Access to Medline (Pub Med), over 9 million medical citations! http://www.ncbi.nlm.nih.gov /PubMed/. Pub Med is an outstanding resource. You can download abstracts of papers as well as order the entire document (for a fee). Please read the introduction section of this web page for some tips and a few suggestions before you start surfing the web for paper abstracts.

Online Mendelian Inheritance in Man (OMIM)

These pages were produced by medical providers who know a lot about skeletal dysplasias. They are a good source of a summary of current information, as well as a place to find the titles of related papers. These papers are technical.

Not all complications listed will necessarily occur: http://www3.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM&cmd=Limits

SED/SMD/Kniest research page list of conditions for other sources about Kniest, SED, and SMD in clear English.

Getting Medical Journals For free

Acknowledgements: Thanks to Prof Bob Brunner for most of these leads.

Note: all these sources were free at the time this web page was published. If you find this is no longer true or discover some new resources, please contact us. Thank you!
You can sometimes get copies of papers by emailing the authors. Email us if you need help emailing the author of a paper.

You may be able to get medical articles for free!

  • Many copies of medical journals are available for free! See http://www.freemedicaljournals.com/. You may want to look up a journal article on PubMed, then see if you can get print it right out! You save time and inter-library loan fees.
  • A fabulous resource is http://ajpendo.physiology.org/searchall/. You can search from hundreds of journals. The web page provides you links for all articles and notes which can be accessed for free. It is a great tool if you need articles right away and do not have much time to search.
  • More free journals are listed at http://biovisa.net. Biovisa links to over 150 biology and medicine journals with free content online.
  • More links to free medical journals are at http://www.bioone.org/. is a consortium to promote free access to a range of general biology journals.
  • The Electronic Journal Miner http://ejournal.coalliance.org/ is hosted by a coalition of Colorado and Wyoming libraries. It lists a wide range of resources, from scientific journals to newspapers. It indicates what is available free.
  • Stanford University is making a special effort to let people know about all possible free medical journals. Please see http://highwire.stanford.edu/.
  • For a carefully selected, classic science papers, please see: http://www.jstor.org/.
  • A good general resource for finding magazine articles is http://www.findarticles.com/PI/index.jhtml.

Note: all these sources were free at the time this web page was published. If this has changed or you have new free medical journal sites to send, please contact us.

 

 

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Skeletal Dysplasia Clinics

 

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Other Useful Medical Sites

General Medical Sites

  • http://www.peoplesmed.org/ “The People’s Medical Society is a nonprofit organization dedicated to educating YOU, the consumer, about health care and your medical rights.”
  • A patient’s guide to the internet: http://www.patientsguide.com/. This site contains helpful information including support groups, medical glossary (the guide to understanding Greek and Latin roots of medical terms is especially helpful), and a list of medical references.
  • Medscape, a site which lists health headline and links to many other sites, http://www.medscape.com/ is a good site to keep up with current headlines. It has a lot of links, including calendars of upcoming medical conventions. This site requires registration. This is a commercial site.
  • http://www.doctorpage.com/ is a comprehensive site allowing you to find medical professionals and research health information. No site registration is required.
  • Yahoo’s health page, http://dir.yahoo.com/Health/Diseases_and_Conditions/. Yahoo, in addition to being an on-line news provider, also has a lot of up-to-date health information. Yahoo provides both links to organizations and includes categories and brief summaries.

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Government Sites

  • The Office of Rare Diseases: http://rarediseases.info.nih.gov
    Information about over 6,000 rare diseases. This is a federal organization focusing on using research on rare diseases as keys to understanding more common conditions. The ORD has links to information about genetics, patient support groups. patient travel, research and Clinical Trials, and research resources. The ORD also sponsors conferences. The ORD also has information in Spanish.

     

  • The US Food and Drug Administration (FDA), http://www.fda.gov/ , regulates clinical trials for medicines and food safety. The FDA also insures the safety of medical devices and food labeling. This page has a handy index and a lot of valuable information.
  • The Unites States Public Health Services, http://www.os.dhhs.gov/ , is the United States government’s principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves. Their web page lists many government health agencies.
  • The Centers for Disease Control and Prevention: www.cdc.com
  • An interesting free journal: http://www.cdc.gov/pcd. This features some conditions, such as arthritis, that are common in people with Kniest, SED, or SMD.

     

  • For information on health insurance, please see the advocacy page.

 

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Question Lists to bring with you to a doctor’s appointment

(Note, these lists still under construction)

This group photo was taken at a KSG event.
This group photo was taken at a KSG event .

All photographs on this Web site are the copyrighted property of the individuals pictured, and have been posted with their permission. All rights reserved. To obtain legal copies of these photographs for any purpose whatsoever, email support@ksginfo.org.