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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

Spina Bifida Genetics Research Project

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Medical Resources

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Medical Resources

Since we began our study, we've received requests for information on a wide range of topics - stem cell research, nerve grafting/regeneration/stimulation, bladder & bowel incontinence treatment or the Xiao procedure.  Here are a few samples of the many resources that are available on the Internet.  Please remember that many sites are not monitored by professionals and tend to highlight research that favors a particular point of view. 

The Medical News is a site that spans current hot topics in Men's Health News to Medical Procedure News.  The site is easy to navigate.  The terminology the authors use is still a bit on the technical side, however, it is generally easier to read than the original scientific articles.  A few months ago they posted a blog on an article published in Nature Cell Biology about a discovery that "opens new doors to research on all spinal defects."  

Medline Plus is not a resource for the most current medical news, but it is a great resource for understanding the basics on topics ranging from meal planning for diabetes to drugs, supplements and herbal remedies.  The site even has interactive tutorials for many of the topics and health information in over 40 languages.  So if you have a family member who does not speak English and is having difficulty understanding their medical condition, this may be your site.  Medline Plus is run by the US National Institutes of Health & the US National Library of Medicine, two very trustworthy sources.

Hopefully the two resources above are a good start for finding the information you need.  The most important thing to remember is that your child's physician should be your primary source for treatment information.

Kristal

www.sbgenetics.org

support@sbgenetics.org

 

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